building integrated systems to address sudden unexpected ...building integrated systems to address...

Building IntegratedSystems to AddressSudden Unexpected

Infant Death

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

S P R I N G 2 0 0 7

BY

SANDRA FRANK, JD, CAEExecutive Director, Tomorrow’s Child/Michigan SIDS

and

SUZANNE BRONHEIM, PH.D.Director, Sudden Infant Death Syndrome and Other Infant Death Project

This document was developed in partnership by the National Center for Cultural Competence, Georgetown UniversityCenter for Child and Human Development and Tomorrow’s Child/Michigan SIDS under Cooperative Agreement #40-MC-00145 with the Maternal and Child Health Bureau, Heath Resources and Services Administration, U.S. Departmentof Health and Human Services.

Table of Contents

The Changing Landscape of Sudden Unexpected Infant Death ............................................................................................................................3

New Understanding of Sudden Unexpected Infant Death ..........................................................3

New Partners and Stakeholders ........................................................................................................................................4

Shifting the Paradigm to Address SUID ................................................................................................................4

Learning From One State’s Journey ....................................................................................................................5

Systems Integration: The Michigan SIDS Program and Infant Safe Sleep ..................................................................................................................6

What is Michigan’s Integrated System?..................................................................................................................6

Challenges of Building an Integrated System to Address SUID ..........................................7

The Michigan Transformation Journey....................................................................................................................8

Building Sustainable Resources for an Integrated System ....................................................................................................................................................15

Strategic Use of Private and Public Partners ................................................................................................16

Developing A Sustainable Approach to Funding ..................................................................................16

Assuring Cultural and Linguistic Competence................................................................................17

Addressing Cultural and Linguistic Competence at the Family and Community Levels....................................................................................................................18

Working Across the Cultures of Agencies, Professions and Stakeholders ............................................................................................................................................22

Conlusion....................................................................................................................................................................................................24

Reference and Related Resources ......................................................................................................................25

The ChangingLandscape of Sudden Unexpected Infant DeathIn 1969, the term Sudden InfantDeath Syndrome (SIDS) was

proposed to describe a clinical entity withcharacteristic findings to diagnose the suddenunexplained deaths of infants, typically duringtheir sleep. At this point in time, the role oforganizations formed by families was tosupport families in their losses and to advocatefor research to address this terrible problem. In1974, federal legislation was passed to fund thatresearch and to establish programs to provideinformation and counseling to familiesfollowing a SIDS death. A series of stateprograms through Title V Maternal and ChildHealth (MCH) agencies were founded to meetthis purpose. In 1992, with the recognition thatplacing an infant on his/her back to sleep couldsignificantly reduce the risk of SIDS, bothfamily support and advocacy organizations andstate SIDS programs expanded their efforts toaddress disseminating this key public healthmessage. In these early years, the number ofentities addressing SIDS and the core missionswere relatively small and the message clear andseemingly easily communicated.

In 2007, the picture is very different. Ongoingresearch and the institution, in manyjurisdictions, of death scene investigations haveled to a far more complex set of risk factors andprotective factors and a set of diagnostic issuesthat broadened the discussion from the onediagnosis—SIDS—to a more differentiatedapproach to diagnosis of sudden unexpecteddeaths of infants (SUID). At the same time,through private sector and government efforts,multiple initiatives to address infant mortalityand racial and ethnic disparities in thesemortality rates have created a larger and morecomplex set of players addressing the issue.Finally, as the number of SIDS diagnoseddeaths has decreased, diminished funding for

state SIDS programs and a diminished sense ofurgency that spurred the original efforts haveled, in many states, to greatly diminishedpublic health resources dedicated to supportingfamilies after a loss and SIDS specific riskreduction efforts.

New Understanding of SuddenUnexpected Infant DeathIn the past almost 40 years, research hasidentified a range of findings that must beaddressed today. These findings, which wereused to inform the 2005 American Academy ofPediatrics policy on risk reduction include:

• racial and ethnic disparities in infant mortality rates and in adoption of behaviors to reducerisks for sudden and unexpected deaths;

• leveling of the decrease in SIDS deaths and aconcomitant increase in other causes ofunexpected infant death;

• identification of non-sleep position riskfactors including smoking, alcohol use,overheating and protective factors includinguse of pacifiers that are complex and not easily communicated or accepted in some communities;

• identification of multiple sleep related riskand protective factors beyond “Back to Sleep”that are not easily communicated or acceptedby some constituencies;

• genetic risk factors;

• research that may lead to screening for riskbased on neurobiological findings.

(Sudden Infant Death Syndrome Task Force, 2005; Weese-Mayer, et.al., 2007; Paterson, et.al., 2006)

In addition, research has shed light on how andif messages related to risk reduction are beingdelivered and accepted. The assumption hadbeen made that families were receiving aconsistent message from multiple healthsystems providers and were incorporatingthose suggestions in their behaviors. The initial

National Center for Cultural Competence—Spring 2007 3

BUILDING INTEGRATED SYSTEMS TO ADDRESS SUDDEN UNEXPECTED INFANT DEATH

and dramatic drop in SIDS rates following theinstitution of the Back to Sleep Campaign mayhave supported that confidence. As ratesleveled out, a more complex picture emerged.Families reported never having received themessages and not necessarily heedingrecommendations of health care providers, butrather listening to older, more experiencedwomen in their communities who did notendorse back sleeping. The importance ofcultural and linguistic competence to addressrisk reduction strategies and the importance ofengaging diverse communities is more salientthan ever. Newborn and intensive carenurseries were not consistently following safesleep recommendations and not teaching themto new parents. The need to look across thesystems and communities that support newparents becomes critical at the same time thatthe message has become more complex. (Rao,et.al., 2006; Colson, et.al., 2006; Bullock, et.al.,2004; Colson and Cohen, 2002; Peek, et.al., 1999;Stastny, et.al., 2004; Willinger, et.al., 2000)

New Partners and StakeholdersAs the understanding of sudden unexpectedinfant death has expanded, so has the numberof programs and initiatives designed to addressinfant mortality rates and disparities. To namejust a few federal efforts and federallypromoted models that are executed at the stateand local level are the following:

• Healthy Start;

• Closing the Gap on Infant Mortality;

• NICHD Back to Sleep African AmericanOutreach initiative;

• NICHD Healthy Native Babies project;

• Fetal and Infant Mortality Review teams;

• Child Death Review teams with a publichealth focus; and

• Center for Disease Control and PreventionSudden Unexpected Death SceneInvestigation form and training.

In addition, campaigns to address smokingduring pregnancy have grown and community-based and national racial and ethnic specificorganizations have highlighted and institutedprograms to address disparities in infantmortality. March of Dimes has focused on theissue of prematurity, a significant risk factor ininfant death. And in each state and locality, anarray of responses to infant mortality hasgrown. At the same time, national and regionalprivate sector support and advocacyorganizations including First Candle/SIDSAlliance and the C.J. Foundation for SIDScontinue their steadfast efforts. There are strongleaders in the organization for professionalswho address SUID in the Association of SIDSand Infant Mortality Programs. There is anarray of potential resources (fiscal, human andknowledge), many champions for this issue,but too many opportunities for fragmentation,overlapping efforts, competing messages, andtoo many opportunities for uncoordinatedefforts to fail.

At the same time, many state SIDS and InfantDeath Programs are losing resources andstaffing time to address the complex,multifaceted issue of SUID. SIDS ProjectIMPACT completed a telephone inquiry of stateSIDS programs in 2005-2006. Data was collectedfrom the state Title V SIDS and Infant DeathProgram administrators (or the designeeresponsible for SIDS/ID) in the fifty states andthe District of Columbia. Programs reportingindicated that in the last 3 years 53% had levelfunding and a full third (33%) had a decrease infunding. Eighty-two percent (41/50) describeda need for more financial support, including 10percent (5/50) who specifically mentioned theneed for support from Title V.

Shifting the Paradigm to Address SUIDThroughout the human services field, there hasbeen a paradigmatic shift over the past 30 yearswhen addressing complex issues in an environment of shifting or diminished resources.

4 National Center for Cultural Competence—Spring 2007


The creation of coordinated, integrated systemshas been the focus of multiple efforts in theMaternal and Child Health Bureau (MCHB),Health Services and Resources Administration(HRSA), U. S. Department of Health andHuman Services. Beginning in the late 1980s theDivision of Services for Children with SpecialHealth Care Needs promoted integratedsystems approaches (Bronheim, et.al.1996) andthis was institutionalized in the OBRA ‘89legislation. The role of state Title V programsfor children and youth with special health careneeds was transformed from service delivery toindividual children and families to systemsdevelopment. MCHB has also promotedsystems integration for services and supportsfor young children (Halfon, et.al. 2004) andtheir families. In other arenas, the SubstanceAbuse and Mental Health ServicesAdministration promotes systems integrationfor serving children and youth with severeemotional and behavioral problems (Stroul, andFriedman, 1996) and substance abuse.

Addressing sudden unexpected deaths ofinfants is the kind of complex issue withmultiple constituencies and programs that isnow ripe for a systems integration approach.MCHB has promoted states’ addressing SIDSand other infant death issues in state levelprograms. It now seems the moment toreconceptualize those efforts from providingservices and promoting risk reduction, toleading or partnering with other leadership tocreate a systems approach.

This systems paradigm entails creating therelationships, an infrastructure and a process tobring together the complex network of stakeholders, including voices from communitiesdisproportionately affected by suddenunexpected infant deaths. The goal is to create integrated, consistently resourced and culturally and linguistically competent approaches to meet Healthy People 2010 Goal 16 to reduce infant andfetal mortality. These approaches must have

buy-in and be evaluated at all levels of thesystem—individual families, communities,organizations/agencies focused on infantmortality, organizations that touch the lives offamilies with infants and young children, largerhealth systems players including birthinghospitals, health plans, and policy makers.

The assets of state SIDS and Infant Deathprograms, with their history of addressing bothbereavement support and risk reduction, andthe expertise and wisdom of the professionalsin those programs should not be redirected.These programs, in many states, are uniquelypositioned to utilize or create partnerships tolead a shift from direct service delivery and riskreduction education to creating integratedsystems to address SUID.

Learning From OneState’s JourneyThe remainder of this reportprovides a narrative of theMichigan SIDS program—

Tomorrow’s Child/Michigan SIDS—a journeyfrom 25 years of parallel and uncoordinatedefforts to a new, state-wide integrated systemsapproach to addressing SUID. It illustrates the program’s experiences traversing the continuum of systems development. It demonstrates howconcepts such as private/public partnership,well designed strategic planning processes andincreasing engagement of stakeholders,especially the communities most impacted bySUID, led to the creation of a system that isstatewide, well-resourced, and addressescultural and linguistic competence. This storywas written by Tomorrow’s Child/MichiganSIDS as a way to share their experiences and tomake abstract concepts real. The NationalCenter for Cultural Competence (NCCC) hascontributed to the framework of the overallreport and helped formulate the section oncultural and linguistic competence.



The Michigan story is told in three sections thatfollow. First, the story tells of the journey froma set of parallel private and public responses toSIDS to an integrated system. The secondsection addressing the issue of resources—in atime of shrinking resources for public healthinitiatives it is useful to learn about thestrategies for fundraising that have support thesystem in Michigan. Finally, the third sectionhighlights the ways in which Michigan utilizedculturally and linguistically competentapproaches in building a statewide system.

Systems Integration: TheMichigan SIDS Programand Infant Safe Sleep

DEDICATION: To the legacy ofSIDS families and professionals

What is Michigan’s Integrated System?Michigan has endorsed Infant Safe Sleeppolicies. Government endorsement andstatewide support for this new, broad set ofrecommendations is a remarkableaccomplishment in which public, private andnonprofit organizations worked togethertoward a common goal: reducing infant deathsrelated to unsafe sleep practices. Workingwithin a growing, integrated system ofstakeholders, a broad-based workgroup craftedan Infant Safe Sleep Final Report that hasdriven the changes in Michigan. However,creating the infrastructure, building trust,enhancing communication and sharingresources that led to the current system beganalmost thirty years earlier. The current systemis well resourced and works to create andsustain culturally and linguistically competentapproaches to systems building and to servicesand supports to families and communities.

Michigan’s Infant Safe Sleep Campaign isaimed at changing behavior and creating anenvironment that reinforces sustained adoption

of these changes. The overarching theme ispermanent systems change through rules,policies, standards, and procedures. Therecommendations reach across existing systemsand involve the public and private sectors toprovide a consistent message among stateagencies, healthcare and non-traditionalpartners. Infant Safe Sleep has partners andchampions outside the traditional public healthand medical models. The Michigan Departmentof Human Services, Department of Education,social services, child welfare, law enforcement,child care, parent education and localcommunities were among the entities rallyingfor a cohesive Infant Safe Sleep effort. However,not everyone initially supported Infant SafeSleep; nutrition and breastfeeding programswere concerned that safe sleep might have anegative impact on the mother’s decision tonurse her baby. Utilizing an effectivepartnership and systems building process,current components of the integrated system toaddress Infant Safe Sleep include:• state health and human service agencies;• state and local education agencies;• academics;• mortality review teams;• pediatricians;• childcare agencies and providers;• local communities;• breastfeeding advocates;• birthing hospitals;• health plans and;• Tomorrow’s Child/Michigan SIDS.

Michigan’s Infant Safe Sleep Campaign isenvisioned as a private/public partnershipcoming from an integrated, state-wide system.From the public perspective, state departmentsare integrating the Infant Safe Sleep messageinto existing programs and services.Distribution of Infant Safe Sleep materials andtraining continue throughout the state agenciesthat provide services to pregnant women,infants, and their caregivers. The state is



designing a new Safe Sleep logo, website andonline professional training modules.

The private sector is responding by sharingresponsibility for and committing resources toInfant Safe Sleep. Tomorrow’s Child/MichiganSIDS (the private, non-profit organization thatnow runs the Michigan SIDS program) isintegrating fund development with programsand is able to engage new public/privatepartners to support Infant Safe Sleep throughgrants, donations, event sponsorship, matchingfunds and in-kind donations.

The broad-based systems approach, whichengaged the governor, led to partnerships toassure adequate resources for the initiatives.Initial funding was provided through the statehealth department which persuaded thelegislature to appropriate one million dollars toaddress disparity in infant mortality rates. Twohundred and fifty thousand dollars wasallocated to implementing the Infant Safe SleepFinal Report. Tomorrow’s Child/Michigan SIDSserved as the fiduciary seat of the project andthus was able to leverage the funds to secureadditional grants and fundraising opportunitiesto support Infant Safe Sleep.

Part of the governance structure, an OversightCommittee, provided input on theinterventions. This group determined thatinterventions be culturally appropriate andimplemented in communities with the highestinfant mortality disparity rates. Initiatives aredata driven with evaluation as a keycomponent. Projects include standardized safesleep materials, focus groups with the targetpopulations, and institutionalizing safe sleep inhospitals, health plans, and childcare.

Challenges of Building an IntegratedSystem to Address SUIDBuilding a state-wide, systems approach toreducing SUID rates and disparities is not anovernight event. It results from enlightened and

effective leaders who can articulate and share anew vision for integrating all the key players inreaching goals to reduce infant mortality andsparing families the heartache of losing aninfant. It is also built on a solid foundation ofexperiences of previous partnership, increasingtrust among the system members, and thepublic will to address the issues. Moreover, itrequires the time and a focused process todevelop the shared understanding of the issues,definitions of challenges, and identification ofresources within a context that tolerates andaddresses conflicting views and interests. Sucha process can then lead to the creation of asystems approach that is implemented andevaluated by an ongoing, institutionalized,collaborative structure. Evidence and dataguide the actions and are used to monitorfidelity to the chosen models of action andprovide input for improving efforts.

Systems Development ContinuumNumerous models characterize the changing nature of relationships among potential partnersin systems development, but Himmelman (1992) presents a useful framework. It outlines a seriesof steps that lead from isolation and parallelefforts to collaboration.


Steps in Collaboration

Networking—exchanging information for mutual benefit with an informal relationship and beginning trust.

Coordinating—exchanging information and alteringactivities for mutual benefit to achieve a commonpurpose with higher levels of relationship and trust.

Cooperating—in addition to altering activities, thisstage involves sharing resources to achieve a

common purpose and may involve formal agreementsand high levels of trust and time together.

Collaborating—in addition to the previously notedactivities, collaborating groups work to enhance thecapacity of the others involved and the groups sharerisks, responsibilities and rewards.

(Himmelman, 1992)


This report reflects one step beyondHimmelman’s final step of collaboration to abroad sustainable transformation that creates anew entity—an integrated system. In systemsintegration collaborating partners create andformalize a new infrastructure to provideleadership, governance and accountability tothe combined efforts in order to institutionalizeshared goals.

The Michigan Transformation JourneyTomorrow’s Child/Michigan SIDS began as aparent nonprofit organization which wasultimately awarded the contract for the stateSIDS program. In its current configuration, thegovernance and function of Tomorrow’s Childand the Michigan SIDS/SUID program havebecome integrated. The resulting organizationis different from many state SIDS programs thatprovide direct bereavement support and riskreduction services. The Michigan modelapproaches SIDS/SUID from a systems changeperspective with Tomorrow’s Child/MichiganSIDS providing infrastructure, conveninggroups, garnering resources and advocating forthe cause. The evolution from direct service tosystems change was gradual and details andlessons learned from the Michigan journey maybe useful for other states. The process movedalong a continuum from parallel efforts tosystems integration, starting with the responseof the public and private sector to the proposedSIDS diagnosis in 1969.

Response to the New SIDS Diagnosis—Parallel EffortsWhen the term sudden infant death syndrome(SIDS) was proposed in 1969, families who hadexperienced the sudden unexplained death ofan infant were the motivating factor behind therecognition of SIDS as the most significantcause of post neonatal death. The earlychallenges for private sector family support andadvocacy groups were raising awareness aboutthe magnitude of the problem and convincing

professionals and the public that parents werenot to blame for their infant’s death.

In the public arena the Sudden Infant DeathSyndrome Act, P.L. 93-270, passed by the U.S.Congress in 1974, authorized funding forresearch and for programs to serve familieswho had lost an infant. In 1975, Wayne County,Michigan was selected for a federally fundedSIDS counseling and education demonstrationprogram. After being hosted in several venuesthe program was moved to Children’s Hospitalof Michigan in anticipation of the federal blockgrant program. At that time, 4 additionalcounties with the next highest SIDS rates weregiven grants to operate SIDS programs. Afterseveral more changes, the program ultimatelywas housed in the Detroit Regional Office forChildren’s Special Health Care Services.

In this early phase, the parent driven responseand the public response were isolated, parallelefforts. SIDS parents clustered together offeringsupport and consolation to each other. Localpublic SIDS programs were led by professionalswho defined policies and interventions, andprovided direct services to bereaved families.At the state level, public and private serviceswere not coordinated, communication andlinkages between the parent and state SIDSprogram were informal.

Early Systems Change in the MichiganSIDS ProgramStructural changes in the parent organizationand state SIDS program initiated Michigan’smovement along the continuum of systemsintegration. Over the years, the isolated SIDS families had coalesced into regional chapters withboards of directors and individual fundraisingevents. The parent chapters merged to form onestate organization, Tomorrow’s Child, a stepthat strengthen their decision-making,encouraged coordination of services, broadenedfundraising, and united advocacy efforts.



Tomorrow’s Child’s attentiveness to corporateinfrastructure and governance provided thebackbone for future collaboration, fundraisingand systems integration. Early in itsdevelopment, the parent organization hired anonprofit management professional whobroadened the Board of Directors to includefamilies as well as state policymakers andinfant mortality organizations. The Boardchartered the parent organization as a nonprofitcorporation and obtained IRC 501 (c) (3)designation which provided the base forsustainable SIDS initiatives.

The formation of Tomorrow’s Child also had animpact on the structure of the state SIDSprogram. At the urging of the parentorganization, the state health departmentconsolidated the numerous local SIDS grantsinto one statewide SIDS program. Resultantsystems changes included:

• state leadership for the SIDS program;

• centralized state decision-making and communication;

• expansion and better coordination ofstatewide services;

• clearer definition of private and public roles;

• raised awareness of SIDS at the state level; and

• improved surveillance of SIDS deaths.With a cohesive parent nonprofit corporationand a centralized state SIDS program, aframework was provided for inter-organizational linkages and communication. After twenty five years of functioning on paralleltracks, Tomorrow’s Child and the MichiganSIDS program began to exchange informationabout how each could support bereavedfamilies, improve provider and respondertraining, and enhance better understanding ofsudden infant death syndrome.

Back to Sleep Provides New Opportunitiesto Advance Systems ChangesAt the point at which Back to Sleep waslaunched, Tomorrow’s Child and the MichiganSIDS program had entered the phase ofnetworking and communication on serviceissues. The parent organization, Tomorrow’sChild, was encouraged to move forward withthe Back to Sleep campaign by health professionals who were aware of the impending national campaign. Using community coalitionbuilding strategies, Tomorrow’s Childconvened a broad-based committee—a coalitionof key stakeholders—consisting of public healthnurses, apnea experts, physicians, providers,health and human service professionals, andfamilies to design the first Back to Sleepmaterials and develop a campaign tocommunicate the message. The efforts wereunderwritten by private funds.

The private and public sector brought uniquestrengths to the Back to Sleep campaign. Thebenefit of having the nonprofit organizationtake the lead in the early stages of Back to Sleepwas that it was not confined by bureaucracy,changes in political administration or fundinglimitations. Because of its independence, theprivate sector could also advocate forgovernment action on Back to Sleep. On theother hand, the public sector could providecredibility and authority needed to sustain thenew initiative. As Tomorrow’s Child movedfrom developing Back to Sleep materials intoimplementation, it sought a more formallinkage with the state health departmentthereby taking another forward step on thecontinuum of systems development.

Strategies for engaging government agenciesare widely varied and, to be successful, shouldtake into account the specific politics andpersonalities involved. Examples might includelegislative mandate or administrative rules. InMichigan, past experience suggested that a task



force might succeed. Tomorrow’s Child,representing the families and the original Backto Sleep committee, advocated with the statehealth department and the Director of Maternaland Child Health (MCH) for a Task Force toaddress Back to Sleep. The MCH directorresponded by convening a statewide SIDS TaskForce and justified the action, in part, on thelack of culturally competent services inrelations to SIDS.

An Infrastructure for Systems ChangeThe Michigan SIDS Task Force established theinfrastructure for further systems change in theSIDS program. Building a coalition (in this casea SIDS Task Force) of key stakeholders is criticalto the systems change process. (Agranoff, 1991)Participants in the coalition must includeindividuals who have the authority to committheir organizations and resources to theinitiative. The MCH Director at that timeprovided the vision and leadership required toselect and engage these key stakeholders. Shealso created a formal process to assess needs,identify the priorities and define the outcomes.In its final structure, the Michigan SIDS TaskForce was broadly representative and includedprovider groups that were involved in SIDS,state agencies, the SIDS family supportcommunity (not yet fully representative of thecommunities most impacted), medicalexaminers, and other stakeholders.

In the systems change model, coordination is acrucial stage in change strategy. The MichiganSIDS Task Force provided succinctrecommendations that required coordination including:

• clear definition of roles and responsibilities;

• more formal communication betweenTomorrow’s Child and the state SIDSprogram;

• improved organizational linkages betweenthe private and public organizations;

• expanded ownership for the SIDS programoutside state government; and

• specific recommendations for private andpublic activities.

Public funding for the Michigan SIDS Task Force recommendations did not increase. However, amore trusting relationship developed betweenthe state health department and Tomorrow’sChild. In addition to shared goals, there begana sharing of resources. Tomorrow’s Childagreed to assist in underwriting the Task ForceFinal Report and to continue funding for theMichigan Back to Sleep materials. Back to Sleepmaterials created by Tomorrow’s Child bore the health department logo and statement “in partnership”.

Impact on the Private SectorThe state had responded to Back to Sleep bybuilding a sustainable infrastructure for theMichigan SIDS program that addressed riskreduction activities, SIDS grief services andsurveillance of infant deaths. The redefinedSIDS program called for coordinated effortsbetween the private and public sectors.

The Back to Sleep campaign and the increasingresponsibilities for the campaign propelledcomparable structural growth for Tomorrow’sChild. The Board of Directors underwent astrategic planning session to change thedirection of the organization. Efforts were made to create formal connections between the private nonprofit organization and the state SIDSprogram. In addition, the first developmentprofessional was hired to assure a consistentrevenue base. These changes in governance, theinitial steps to integrate Tomorrow’s Child andthe state SIDS program, and attention to funddevelopment, deepened the private sectorinfrastructure to help support and carry out thenext step in the private/public partnership—formal collaboration.



Toward Cooperation and Collaborationwith the Michigan SIDS/SUID ProgramThe Himmelman model describes cooperationas requiring greater organizationalcommitments from the partners which mayinclude written agreements. Such was the casein Michigan. After several years of workingtogether to implement the Michigan SIDS TaskForce and Back to Sleep campaign, Tomorrow’sChild and the state SIDS program hadestablished a higher level of trust and sharedresponsibility. The private/public partnershipwas formalized when the state health

department awarded the contract for the SIDSprogram to Tomorrow’s Child. By moving thecontract, a systems change had beenimplemented that would assure communityinvolvement and continued advocacy to sustainthe SIDS program. Tomorrow’s Child sooncalled itself Tomorrow’s Child/Michigan SIDSto reflect this integration.

The formal agreement between Tomorrow’sChild and the state health department causedthe partnership to quickly advance from thecooperation stage to collaboration. The healthdepartment designated a part-time SIDS nurseconsultant to provide technical assistance andoversight. Risk, responsibilities and rewardswere shared. Private and public resources werecombined to support the SIDS program. The MCH director served on the Tomorrow’sChild Board of Directors and the ExecutiveDirector began to participate in the state infantmortality initiatives.

Systems Integration to Address SIDS/SUIDSystems integration is designed to changeservice delivery for a defined population andinvolves fundamental changes in the wayagencies share information, resources, andclients (Dennis, et.al. 1999). In particular,systems integration focuses on reducingbarriers, coordinating and improving existingservices and developing new programs toimprove the availability, quality, andcomprehensiveness of services (Miller, 1996).

System integration requires the creation offormal relationships among agencies withinand across systems. (Agranoff, 1991; Cocozza etal., 2000). Awarding the state SIDS contract toTomorrow’s Child was the first step. Over thepast decade, the lines between Tomorrow’sChild and the Michigan SIDS/SUID programhave blurred and the partnership steadilyprogressed towards system integration.Integrating the nonprofit organization andSIDS/SUID program allowed it to function



Overview of Strategic Planning

What is strategic planning?Strategic planning is a step-by-step process to helpan organization adjust to changing environments,transform and revitalize, focus energy, and ensuremembers are working toward the same goals. It is adisciplined effort to make fundamental decisions andtake action that shape and guide what anorganization is, what it does, why it does it with afocus on the future (Bryson, 2004).

Who should be involved?The board and staff share responsibility for strategicplanning and must carefully decide who will beinvolved. As a general rule, the process shouldinvolve important stakeholder groups.

When is the time right?Each organization must decide for itself when thetime is right to plan strategically. New opportunities,loss of funding, mission shift, and leadership changes are often the impetus to plan (Lyddon, 1999).

How does planning work?A professional consultant can provide structure to theactivities, facilitate consensus, and keep the processand discussions on track and on time. Board andstaff often lack objectivity and time to overseestrategic planning. Organizations often find that anindividual who is not involved with its regular workcan help with the planning process. An outsideconsultant can facilitate the process so leadershipcan make decisions about mission, vision, goals, and implementation (Mittenthal, 2002).

more fluidly, to scan the environment broadlyand respond more rapidly to concerns, and toidentify resources and link them together. (TheLewin Group, 2003).

Michigan was then poised to develop anintegrated system with an increasing number ofmembers. This system enabled Michigan totake on the new challenges presented by statedata which indicated that an approach and amethod broader than back to sleep was neededto impact SUID.

Response to Changing EpidemiologyRequires Organizational TransformationState vital statistics indicated that, although theSIDS rate was declining, the overallpostneonatal rate had stagnated. Theunderstanding of SIDS and the historicalconcept of ‘not preventable’ was beginning tochange. Many of these sudden infant deathswere not SIDS, and involved modifiable riskfactors, including sleep related factors, meaningthat they may have been preventable.

One of the major challenges confronting SIDSprograms was that, although there was anapparent decrease in SIDS rates, the number ofreferrals for grief services had not declined. InMichigan’s situation, the referrals for otherinfant deaths were actually increasing. Thecauses varied and included accidental,suffocation, asphyxia, undetermined, suddenunexpected death in infancy, and suddenunexpected infant death. A significant numberof referrals were for premature and low birthweight babies. In 2003, of the 341 postneonatalinfant deaths in Michigan, only forty six wereclassified as Sudden Infant Death Syndrome(Grigorescu, 2004b).

For many programs, the expansion from SIDSto SUID and other infant deaths has beendifficult, yet the transition from providingdirect services related to only to SIDS deaths toproviding systems leadership for SUID is a

critical step. Tomorrow’s Child/Michigan SIDSused group process techniques to navigate anew direction. The organization wascontemplating what felt like a seismic shift and,given the intensity of the issues, recognizedthat a different type of expertise would berequired. For any organization, this phase offersboth great risk and opportunity, and requiresdeliberate and professionally guided processes.

The state public health department was quickto change the mission of the SIDS program.Conversely, the parent nonprofit partner,Tomorrow’s Child, struggled with expansioninto other infant deaths. Tomorrow’s Child’sapproach to the conflict may be instructive fororganizations evaluating their role andrelevance in this complex new SUIDenvironment. It hired a strategic planningprofessional to facilitate an extensive eighteenmonth process with the Board of Directors. Theplanning sessions were data-driven: the stateMCH epidemiologist presented infant mortalityrates, disparities, demographics, trends in SIDSand postneonatal deaths, and the possiblediagnostic shift. Internal and externalstakeholders were surveyed to assess theirperception of Tomorrow’s Child and theirresponse to a possible change in mission. The Board reviewed the organization’s history, variation in services, and changes infunding streams.

At the conclusion, the facilitator recommendedthat the mission statement be revised toaccurately reflect the services being provided(Monahan Associates, Inc., 2001). This processalso brought the issue of racial disparities intofocus and shifted the mission to address them.After thorough consideration of the issues, theBoard resolved to be inclusive in itsgovernance, structure and services:

“We must move forward to address the disparityissue, continue to include people of color on ourBoard, and recruit persons who have beenaffected by the death of an infant from a cause



other than SIDS. The organization is addressingan unserved and underserved population withits risk reduction and grief programs. Themission and organization name should bechanged to reflect the services being provided.”

The revised mission created significantpotential to expand services, programs,capacity building and funding. The strategicplan provided an infrastructure that wouldsustain Tomorrow’s Child/Michigan SIDS andmove the private/public relationship closer tofull integration.

Developing a Systems-Change Approach for Infant Safe SleepState level data led the expanding coalition ofsystems partners to the conclusion thatMichigan needed an approach that wentbeyond the Back to Sleep initiative to saveinfant lives. Although the state had beenblanketed with Back to Sleep information,professionals and communities were reportingthat the Back to Sleep message was inconsistentand often inaccurate. Despite its extraordinarysuccesses, Back to Sleep had not beeninstitutionalized. In addition, new data within Michigan suggested that additionalbehavioral changes related to infant sleep might be crucial to addressing the broaderarray of SUID that was occurring. A newinitiative, Infant Safe Sleep was conceptualizedto address the full range of issues that the statedata were reflecting.

The success of the data driven, facilitatedprocess for transforming Tomorrow’sChild/Michigan SIDS suggested that a similar data-driven strategic planning process should beimplemented for the Infant Safe Sleep initiative. Back to Sleep was a public health educationcampaign and was launched with such urgencythat procedures had not been implemented tomeasure outcomes. Acceptance of infant sleepmessages requires changing the values, knowledge, practice and beliefs of providers and

caregivers. With the newly proposed Infant SafeSleep initiative, Tomorrow’s Child/MichiganSIDS proposed a systems-change approachwith interventions that could be permanent andsustainable. Unlike Back to Sleep, effort wasmade to assure that Infant Safe Sleep initiativeswould include evaluation and measurableoutcomes. Evidence obtained from evaluationcould help ascertain if the initiative was asuccess and feedback could guide any changesor adjustments that needed to be made.

Back to Sleep had national support but InfantSafe Sleep as Michigan began the process, stilllacked federal or state endorsement. Instead,the campaign was launched on the basis of therelationships that had been built among thepartners in the growing, integrated system,their common understanding of the issue, andshared commitment to reducing infantmortality. Michigan’s Infant Safe Sleepcampaign began as a true partnership.

As with Back to Sleep, the benefit of having thenonprofit organization, Tomorrow’sChild/Michigan SIDS, initiate the early stagesof Infant Safe Sleep was that it was notconfined by bureaucracy, changes in politicaladministration or funding limitations.Strategies included tapping the developingintegrated system to partner on state and localsummits on infant safe sleep, engage print andbroadcast media coverage, and secureadditional funding for the campaign. Thesystems and infrastructure established withBack to Sleep provided the foundation forInfant Safe Sleep and expedited the work.Tomorrow’s Child/Michigan SIDS soughtcommunity input to build support for the newmaterials, and convened public health andhealthcare professionals to draft the teachingtools that would be required. Local Back toSleep coalitions began converting to Infant SafeSleep coalitions to assist with the campaign.Health professionals and local coalitions testedthe draft materials with clients for cultural and



linguistic competence. Tomorrow’s Childobtained grant funding to produce anddistribute the first Infant Safe Sleep brochures.

Engaging the Integrated SystemWhile starting the initiative within the privatesector provided the flexibility and funding,continuing the effort needed the public sector’sinvolvement. Tomorrow’s Child/MichiganSIDS and the Infant Safe Sleep proponentsrecognized that the campaign needed thecredibility and authority of state agencyleadership. Once again, the strategy inMichigan was to gather key stakeholders. TheMichigan Department of Community Healthand Department of Human Services providedthe leadership and convened the MichiganInfant Safe Sleep Workgroup to create a planthat would integrate a consistent Infant SafeSleep message. Participants included statehealth and human service agencies, education,academics, mortality review teams,pediatricians, childcare, local communities,breastfeeding advocates, Tomorrow’sChild/Michigan SIDS and others (MichiganDepartment of Community Health, 2004). Seepage 22 for a more detailed description of theconsensus process. The Infant Safe Sleep FinalReport completed by the Workgroup called forsystems-change among health providers,childcare, state government, health associationsand others. The final recommendations alsocalled for an interagency committee to overseeimplementation and assure accountability—anew part of the integrated systems governanceinfrastructure (Michigan Department ofCommunity Health, 2004)

Expanding the Sphere of InfluenceReaching consensus on the Infant Safe SleepFinal Report was a remarkableaccomplishment. The recommendationsprovided a plan of action that would integrate aconsistent safe sleep message in state agencies,healthcare providers and non-traditional

partners. However, expanding the Infant SafeSleep campaign to the private sector requiredthe authority of state government. Formalsupport by state leadership would bothlegitimize and sustain the recommendations.Circling back to the Directors of theDepartment Community Health andDepartment of Human Services who hadoriginally convened the Infant Safe SleepWorkgroup, Tomorrow’s Child/Michigan SIDSrequested an opportunity to present the FinalReport to the Governor’s Children’s Cabinet.The MCH director and Tomorrow’sChild/Michigan SIDS presented together andthe Cabinet endorsed the Final Report, givingMichigan the distinction of the being the firststate with Infant Safe Sleep policies.

The Michigan Department of CommunityHealth, Department of Human Services, andDepartment of Education are creating newways to integrate Infant Safe Sleep into existingsystems. The Department of CommunityHealth is developing online professionaltraining modules for its newly revised MaternalInfant Health Program (previously MaternalSupport Systems/Infant Support System). TheDepartment of Human Services is designing aSafe Sleep logo and Web site providing linkagebetween the public and private sector partners.Distribution to personnel of the state InfantSafe Sleep information and training continuesthroughout the state. The Governor’s GreatStart initiative is promoting Infant Safe Sleep tofamilies throughout Michigan.

Tomorrow’s Child/Michigan SIDS hascontinued to bridge with the private sector topromote systems change. The public sector isresponding by sharing responsibility andcommitting resources to Infant Safe Sleep. InMarch 2007, the Michigan Health and HospitalAssociation convened Michigan’s 20 largestdelivery hospitals to secure participation inhospital safe sleep projects. The MichiganAssociation of Health Plans and Tomorrow’s



Child are finalizing a pilot project to createstandard education protocols, materials, andevaluation tools for clinics and physicianpractices affiliated with Medicaid health plans.Those protocols, materials, and evaluation toolswill be extended to the remaining Medicaidplans through the professional association.Other health and human service professionalassociations are highlighting Infant Safe Sleepin conferences, workshops, and publications.

The System Works to Change Practice—Engaging Birthing Hospitals for Systems-ChangeThe broad, integrated system that hasdeveloped in Michigan has supported anumber of concrete efforts to make enduring,systems changes. A systems-change approachto Infant Safe Sleep is significantly differentfrom the direct service model of the traditionalSIDS program. Tomorrow’s Child/MichiganSIDS chose birthing hospitals as the first site topilot a systems-change intervention. Thedecision was based on data and experiencewhich demonstrated that hospitals had aprofound influence on, and modeled behaviorfor, the new parent. However, anecdotalevidence suggested that health professionalsstill did not believe or teach Back to Sleep.Findings from the Pregnancy and RiskAssessment Monitoring System and nationalstudies indicated that the early Back to Sleepmessage appeared to have had a lesser impacton the infant sleep practices of African-American women. Vital statistics and thePerinatal Periods of Risk model indicated thatthe hospital projects should be implemented incommunities with high disparity between Blackand White infant mortality rates (Colson &Joslin, 2002; Bullock, Mickey, Green, & Heine,2004; Michigan Department of CommunityHealth, 2003; AAP, 2000; Caravan OpinionResearch Corporation International, 2000;Hauck et al., 2002; & Flick, White, Vemulapalli,Stulac, & Kemp, 2001).

Using the data described above, Tomorrow’sChild/Michigan SIDS sought and was awardeda three-year grant from The SkillmanFoundation to institutionalize Infant Safe Sleepin two birthing hospitals in city of Detroit(Tomorrow’s Child/Michigan SIDS, letter ofintent to The Skillman Foundation, October 18,2002). The projects included evaluation anddeveloped standardized policies, professionaltraining curricula and patient education.Tomorrow’s Child/Michigan SIDS convenedthe internal workgroup, developed the plan,provided information and expertise, monitoredprogress, and ensured adequate resources—arole quite different from the direct servicemodel of the traditional SIDS program. Seepage 21 for a fuller description of this activity.

Building SustainableResources for anIntegrated SystemAs resources to support SUIDspecific endeavors as well as

general public health activities has decreased, aconstant challenge to state SIDS and InfantDeath Programs is funding. As already noted,82% of current SIDS and Infant Death Programsnote insufficient funding to address the needsof their states. Based on the Michiganexperience, systems building and thepartnerships and joint ownership for SUIDefforts can create opportunities for greatlyincreasing the pool of resources available toaddress risk reduction and bereavementsupport. The formal relationship between thenonprofit organization and state healthdepartment contributed to the sustainability ofthe Michigan SIDS/SUID program and enabledincreased support by leveraging officialresources. Facing continuing tight budgets andlack of resources, other SIDS/SUID programsmay want to consider opportunities to integrateresources and expertise with community and private sector resources. (The Lewin Group, 2001)



Strategic Use of Private and Public PartnersInvolving Tomorrow’s Child/Michigan SIDSwas an effective approach to filling gaps left bybudget and human resource shortfalls in theSIDS/SUID program. By partnering with anonprofit organization, the MichiganSIDS/SUID program was able to enhanceresources needed to maintain the public healthactivities. Services were expanded withoutsignificantly increasing the commitment of stateresources. Because of independence fromgovernment, Tomorrow’s Child/Michigan SIDScould seek funding from public and privatesources without necessarily being bound bygovernment agency priorities. (The LewinGroup, 2003)

Developing A Sustainable Approach to FundingAs with most nonprofit human serviceorganizations, the early fundraising efforts inMichigan began with local events involvingfamily and friends of bereaved parents. Specialevents typically did not involve corporatesponsorship or engagement. Events generallyhad a life cycle of 3-5 years, depending on theenergy and interest of the founding parents.

As with programs, the goal with fundraising issustainability and integration. Resources mustbe predictable and consistent in order to createbudgets, maintain an infrastructure and assurecontinued services. Three factors can movefundraising beyond grassroots and enhancefundraising efforts. One is strong programs.Programs that are meeting importantcommunity needs and demonstrating resultswill sell themselves. The second is a board thatis committed to its fundraising responsibilitiesand takes their role in fundraising seriously.The third is professional development staff.

Current day fundraising has become systematicand almost scientific in its approach. And allfundraising begins with the mission.

Tomorrow’s Child/Michigan SIDS has foundthat its mission—infant health and well being—is extraordinarily compelling. The issue hasstrong private sector allies that have thecapacity and the motivation to contributefinancial resources to the cause. New sources offunding have included foundations,corporations, and other health and humanservice organizations.

Grants have been a significant source offunding for Tomorrow’s Child/Michigan SIDS.Funders want evidence to support theapplication and they want evaluation to assurethe expected outcomes. Increasingly,foundations are becoming more interested inhow their grant will be leveraged to expandand sustain the programs being funded.Grantors for Tomorrow’s Child/Michigan SIDShave included private, community, family andcorporate foundations. Relationships withgrantors are nurtured and respected and, whenpossible, multi-year grants have been sought.The application process started with aligningthe mission with the grantor’s core interests.While no means exhaustive, areas of interesthave included:

• parenting;

• high risk families and children;

• infant health and well being;

• systems change;

• community collaboratives and coalition building;

• child care;

• minority health; and

• family preservation.

Tomorrow’s Child/Michigan SIDS has beenable to use foundation resources to leveragenew sources. For example, funding from TheSkillman Foundation (see page 24) for thehospital-based pilot projects was used toleverage matching funds from Michigan’s



Health Disparities Reduction Program targetingcommunities with highest disparity in infantmortality. Findings from these pilot projectsinfluenced the interventions initiated with the$250,000 allocation for Infant Safe Sleep fromthe state health department (page 22). A portionof the $250,000 funds was matched by thehealth plan association.

In seeking resources for SIDS/SUIDS programs,all possible sources should be considered. Theprivate sector has been a valuable partner withInfant Safe Sleep and forming partnerships between state and the private sector has been an effective way for Tomorrow’s Child/MichiganSIDS to leverage additional program funds.Corporations, businesses, foundations andhealthcare associations have supported themission by hosting and sponsoring specialevents. Likewise, these entities have expandedthe circle and have linked with theircontractors, suppliers, constituents and alliedassociates to request additional sponsorshipand involvement in events.

Fundraising can be an all-consuming activity,requiring a balance between programmanagement and raising funds. Hiring a funddevelopment professional or seeking outsideexpertise is a must for most organizations. Aswith programs, an infrastructure should bebuilt and standards set for ethical activities.Ideally, fundraising initiatives and programsshould be integrated. Fundraising is generallynot a favored task for SIDS/SUID programs butis quickly becoming a necessity. For those thatmay be uncomfortable with this new dynamic,keep in mind that the goal is to advance themission: saving babies’ lives.

Assuring Cultural andLinguistic CompetenceThe NCCC definition of culturalcompetence holds that culturalcompetence requires that

organizations: have a congruent defined set ofvalues and principles, and demonstratebehaviors, attitudes, policies, and structuresthat enable them to work effectively cross-culturally. (See page 19 for a full definition ofcultural competence.) The NCCC definition oflinguistic competence stipulates that it is thecapacity of an organization and its personnel to


Basic Fundraising Concepts

The Starting PointFundraising begins with mission. Every organizationhas a responsibility to understand its rationale forexistence. Mission is the means for bringingindividuals, corporations, foundations, and otherstogether to carry out mutual interests.

Strategic Decision MakingFundraising supports the goals and programsarticulated in the strategic plan. Ideally, theorganization develops a fundraising plan that reflectswhat is known about organizational function.

Making the CaseFor effective fundraising, the organization must make‘the case’ giving all the reasons why anyone shouldcontribute. The case articulates the problem, goals,services, quality effectiveness, and should validatethe need for philanthropy.

Building an Information BaseResearch can help assure that fundraising efforts willbe effective by matching the potential contributor’sinterests and needs with the organization’s mission, goals, and objectives. Sources of contributions includecorporations, foundations, bequests and individuals.

Annual FundAnnual fund means the organized effort to obtaingifts on a yearly basis to support general operations.Strategies include special events, grant proposals,direct mail, phone appeals, personal solicitation,recognition groups, and challenge gifts. Selection ofthe appropriate strategy is based on the ability ofeach to produce maximum gifts and support, and theresources, budget and staff available to carry out theprogram (The Fundraising School, 2002).


communicate effectively, and conveyinformation in a manner that is easilyunderstood by diverse audiences includingpersons of limited English proficiency, thosewho have low literacy skills or are not literate,and individuals with disabilities. (See page 21for a full definition of linguistic competence.)

The Michigan experience demonstrates severalaspects of how cultural and linguisticcompetence was incorporated during theprocess of moving from parallel efforts to an integrated system. The work of building systems involves cross-cultural work at several levels.First, there is the need to address the racial,

ethnic, linguistic and cultural diversity withinthe state in providing risk reduction andbereavement support services to families. Asdata on racial disparities in SUID in Michigangrew, the urgency of creating culturally andlinguistically competent approaches increased.There is, however, a second level at whichcross-cultural work was critical to the systems-building process. Collaboration and systemsbuilding entail bringing together multipleindividuals, professional groups, constituencies and institutions with a stake in addressing infant well-being, each of which brings a culture—aset of beliefs, values, ways of interacting, andworld views. Working to integrate all of thoseperspectives into a common purpose with a setof common goals and shared actions requiredthe approaches and perspectives of cultural andlinguistic competence.

Addressing Cultural and LinguisticCompetence at the Family andCommunity LevelsCultural and linguistic competence ineffectively implementing risk reduction effortsand in providing appropriate bereavementsupport evolved over the course of the systemsintegration journey in Michigan. Culturalcompetence was needed to understand andthus effectively and respectfully address: 1) beliefs about the causes of SUID, 2) long-heldapproaches to child rearing, 3) ways of seekingsupport, 4) credible sources of information, and5) assurance that the families and communitiesserved were full partners in planning,implementing and evaluating the approacheschosen. Linguistic competence was key toassuring that the information provided wasunderstandable and usable by all families andcommunities—this involved not only thosewith limited English proficiency, but also thosewith low or no literacy skills, those with lowhealth literacy and individuals who requiredinformation in accessible formats.


Cultural and Linguistic Competence inDeveloping a Community-based,

Statewide System to Address SIDS andInfant Safe Sleep

The systems governance infrastructure and activitiesreflect the following:

• Mission statement that articulates cultural andlinguistic competence

• Membership on boards and advisory groups thatreflect the diversity of communities served andinterested stakeholders

• Staff and volunteer recruiting and retention thatreflect diversity of the communities served

• Ongoing review of demographic trends in thecommunities affected by SUID

• Formal process to identify and acquire knowledgeabout health and mental health beliefs andpractices of populations served

• Activities and approaches that respects and reflectcultural beliefs, values, and practices of theintended audiences

• Formal process that assures meaningfulinvolvement of community members and keystakeholders in determining need for any actionand in designing, implementing and evaluating the approach

• Policy and dedicated resources to assurelinguistically competent approaches

• Capacity to address the dynamics of differencewithin the organization


Family Involvement in Program PlanningThe early parent and family organizations inMichigan were created and run by families thatdid not necessarily reflect the full racial, ethnic, linguistic or socioeconomic diversity of the state. There, was, however, an opportunity for thefamilies that were involved to begin to shape the kinds of services and supports that met their specific needs. On the public side, the initial Michigan SIDS program was a traditional public health program in the sense that professionalsdefined the policies, services, and interventions,and consumers were minimally involved. In1991, however, when the regional SIDS parentgroups merged to form Tomorrow’s Child, the parent community advocated for and succeeded in attaining consumer input in the public SIDSprogram on planning and implementation ofbereavement services for families. This was afirst step in utilizing culturally competentapproaches to SIDS in Michigan.

Expanding Board Membership to AddressCultural and Linguistic CompetenceIn the following years, Tomorrow’s Childrecognized that its programs needed to seekinput of a far broader audience to addresscultural and linguistic competence. Tomorrow’sChild utilized the findings of the MichiganSIDS Task Force to study these issues. Becauseof the Task Force recommendations, the Boardof Directors of Tomorrow’s Child understoodthe need for members with more policy andhealthcare expertise. The Task Force Report hadalso increased the Board’s awareness of theneed for diversity among its members. Throughstrategic planning and purposeful design, theBoard of Directors sought representation in twoareas: 1) healthcare policy and 2) diversity. TheMCH Director was immediately recruited tojoin the Tomorrow’s Child Board of Directors.She assisted in identifying and recruitingpotential candidates. With their input, theBoard was strengthened by the inclusion ofculturally diverse members with expertise inpolicy, healthcare and medicine.

Dedicated Resources Support Cultural andLinguistic CompetenceAlthough the overall SIDS rates in Michiganhad declined 43% following implementation ofthe Back to Sleep Initative, significant racialdisparity continued. Michigan’s experience wasconsistent with national findings. The nationaldirective for the Back to Sleep initiative in 1997to develop culturally appropriate interventions opened the door for full partnership between the state SIDS program and Tomorrow’s Child. Anew MCH Director had been appointed and heawarded the contract to Tomorrow’s Child, formalizing the partnership. Acknowledging the disparity in SIDS rates, the new MCH directorsuccessfully advocated the legislature for a one-time appropriation of $350,000 for a culturallycompetent public awareness campaign andcommunity-based Back to Sleep intervention.Tomorrow’s Child offered to match the fundsthrough grants and fundraising initiatives. Byintegrating public and private resources,



National Center for Cultural CompetenceDefinition of Cultural Competence

Cultural competence requires that organizations:

• have a congruent defined set of values andprinciples, and demonstrate behaviors, attitudes,policies, and structures that enable them to workeffectively cross-culturally.

• have the capacity to (1) value diversity, (2) conductself-assessment, (3) manage the dynamics ofdifference, (4) acquire and institutionalize culturalknowledge, and (5) adapt to diversity and thecultural contexts of communities they serve.

• incorporate the above in all aspects of policydevelopment, administration, practice and servicedelivery, and systematically involve consumers,families and communities.

Cultural competence is a developmental process that evolves over an extended period. Bothindividuals and organizations are at various levels ofawareness, knowledge and skills along the culturalcompetence continuum.

(Modified from Cross et al., 1989)

services were expanded and public healthcapacity was increased to specifically addressfamilies at high risk in the African-Americancommunity. The state health department andTomorrow’s Child combined funds to hire newSIDS program personnel: the state contract wasused to hire a full-time public health nurse, a portion of the one-time appropriation supported a community-based nurse, and Tomorrow’sChild obtained a grant for a risk reduction coordinator. The new staff was culturally diverse and possessed the knowledge and relationshipsneeded for community engagement.

Meaningful Community Engagement to Address Cultural and Linguistic CompetenceThe partners wanted to assure meaningfulcommunity participation in planning the state’sculturally competent Back to Sleep campaign.Pursuant to the state contract, Tomorrow’sChild/Michigan SIDS was expected to providetechnical assistance to Michigan communitiesseeking to implement a Back to Sleep initiative.Detroit, which had one of the highest disparityrates in the state, was a priority. Tomorrow’sChild/Michigan SIDS, backed by the authorityof the state health department, asked theDetroit Health Department to partner in aculturally relevant Back to Sleep campaign.

Together, Tomorrow’s Child/Michigan SIDSand the Detroit Health Department convened aBack to Sleep coalition which was composed ofcommunity members, local public health,alternative education, infant mortality projects,teen mother programs, community hospitals,representatives from the Native Americantribes in the city, the Arab community, andothers. The Detroit Back to Sleep coalitiondesigned and helped implement the newculturally competent Back to Sleep campaign.Activities included:

• conducting an informal pre-campaign survey;

• reviewing all materials and providing inputon content and cultural competence;

• contributing to and recommendingapproaches to integration of message into community;

• discussing and recommending allocation ofcampaign materials, and committee andTomorrow’s Child resources;

• collecting data on Detroit infant deaths by zipcode;

• disseminating campaign materials toneighborhoods with highest incidence ofinfant deaths;

• administering an informal post-campaignsurvey to target population; and

• sustaining committee activities and Back toSleep intervention.

To address the African-American SIDSdisparities, focus groups and interviews helpeddetermine the communication tools and themessage content. Participants were African-American women of child-bearing age andsenior caregivers such as grandmothers andaunts. Community feedback was instrumentalin assuring that the materials were created in alinguistically competent way.

Addressing Linguistic Competence inMaterials DevelopmentBack to Sleep Materials were developed inSpanish and the new Infant Safe Sleep materialsare available in Spanish and Arabic. However,the efforts of Tomorrow’s Child reflected theunderstanding that linguistic competenceextends beyond the issues of Englishproficiency. The initial Back to Sleep writtenmaterials created for Michigan were at the 8thgrade reading level. Materials from the nationalBack to Sleep Campaign were determined to beat an even higher reading level. Communityinput indicated that these materials would notbe useful to many families with limited literacy.Tomorrow’s Child then consulted the stateMedicaid requirements for written materials forconsumers. It was determined that information



needed to be presented at a maximum of afifth-grade reading level and with manypictures and illustrations. This approach wasembraced by the community.

Tracking Racial and Ethnic Specific DataGuides Continued EffortsFollowing the Back to Sleep efforts, Michigancontinued to follow health data related todisparities. African-American infants inMichigan were almost three times more likelyto die than White infants. The early Back toSleep message appeared to have had less of animpact on the infant sleep practices of African-American women (Michigan Department ofCommunity Health, 2003). Black women wereleast likely to place infants on their backs thanany other race or ethnicity and had the highestrate of bedsharing. Bedsharing deaths weretwice as common in Black infants as weredeaths on nonstandard sleep surfaces such asmattresses or sofas. African-American mothersalso had increased use of pillows, soft beddingand stuffed toys (AAP, 2000; Caravan OpinionResearch Corporation International, 2000;Hauck et al., 2002; & Flick, White, Vemulapalli,Stulac, & Kemp, 2001). This data was utilized tocraft ongoing systems change efforts.

Community Engagement Guides Infant Safe SleepCommunity engagement to address culturaland linguistic competence becameinstitutionalized in Michigan’s response toSUID. When Michigan expanded from Back toSleep to its Infant Safe Sleep initiative, engagingthe community was the way to do business.Turning to the systems infrastructure andrelationships established with Back to Sleep,Tomorrow’s Child sought community input tobuild support for the new materials, andconvened public health and healthcareprofessionals to draft the teaching tools thatwould be required. Local Back to Sleepcoalitions began converting to Infant Safe Sleep


National Center for Cultural CompetenceDefinition of Linguistic Competence

The capacity of an organization and its personnel tocommunicate effectively, and convey information in amanner that is easily understood by diverseaudiences including persons of limited Englishproficiency, those who have low literacy skills or arenot literate, and individuals with disabilities. Linguisticcompetency requires organizational and providercapacity to respond effectively to the health literacyneeds of populations served. The organization musthave policy, structures, practices, procedures, anddedicated resources to support this capacity. Thismay include, but is not limited to, the use of:

• bilingual/bicultural or multilingual/multicultural staff;

• cross-cultural communication approaches

• cultural brokers;

• foreign language interpretation services includingdistance technologies;

• sign language interpretation services;

• multilingual telecommunication systems;

• videoconferencing and telehealth technologies;

• TTY and other assistive technology devices;

• computer assisted real time translation (CART) orviable real time transcriptions (VRT);

• print materials in easy to read, low literacy, pictureand symbol formats;

• materials in alternative formats (e.g., audiotape,Braille, enlarged print);

• varied approaches to share information withindividuals 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 and Jones (2006)


coalitions to assist with the campaign. Healthprofessionals and local coalitions developed thedraft materials with clients for cultural andlinguistic competence. Tomorrow’s Childobtained grant funding to produce the firstInfant Safe Sleep materials and distributionbegan in March 2002. Continuing efforts toevaluate the effectiveness of the Infant SafeSleep initiative utilize community engagement.The campaign is changing based on communityfeedback and evaluation findings. Next stepsneed to include assessment of knowledge andadherence at the community level. Focusgroups of African-American mothers have beencompleted and will provide insight intoknowledge, practice and beliefs about infantsleep environment. Questions include the roleof family and community in learning aboutinfant care practices. Existing strategies will bemodified and new ones will likely emerge.

Organizational Structure and Policy to Support Cultural and Linguistic CompetenceOrganizational structure and policy alsoevolved to support cultural and linguisticcompetence. As already noted, whenTomorrow’s Child/Michigan SIDS determinedthat there was a need to transform theorganization from one that exclusivelyaddressed SIDS to one that would provideleadership in creating an integrated system toaddress SUID, it hired a strategic planningprofessional who facilitated an eighteen monthprocess with the Board of Directors. Thatprocess also led to a change in the mission andstrategic plan of the organization to addresscultural and linguistic competence. See page 12for the changes to the mission statement.

Working Across the Cultures ofAgencies, Professions and StakeholdersThe final array of individuals, organizationsand interests that are reflected in the Michiganintegrated system to address SUID is verydiverse in terms of values, beliefs, areas of

focus and approaches. An important aspect ofculturally competent organizations is thecapacity to deal with the dynamics ofdifference. Whenever individuals from differentcultural backgrounds and perspectives(including professional or institutional cultures)are brought together, there is likely to be someconflict and potential for cross-culturalmisunderstanding. The capacity—skills andprocesses—to deal with these potential conflictsis central for a culturally competentorganization In Michigan, Tomorrow’sChild/Michigan SIDS, as a key leader andconvener for the broad, state-wide integratedsystem demonstrated a number of culturallycompetent approaches.

Addressing the Dynamics of Cultural DifferencesAs Michigan approached developing the new,Infant Safe Sleep initiative, it was clear that avery broad set of stakeholders had to beengaged, their perspectives understood, theirconcerns addressed and collective actionscreated that worked within the organizationaland group cultures they represented.Acceptance of the infant sleep messagesrequires changing the values, knowledge,practice and beliefs of providers and caregivers.

Infant Safe Sleep had a far broader set ofsystems partners than Back to Sleep hadgarnered. The Michigan Department of HumanServices, Department of Education, socialservices, child welfare, law enforcement, childcare, parent education and local communitieswere now at the table. In addition, as alreadynoted, nutrition and breastfeeding programswere concerned that safe sleep might have anegative impact on the mother’s decision tonurse her baby. The topic was controversial andemotional with strong advocates on all sides.The MCH Director created an Infant Safe SleepWorkgroup which was officially convened bythe Michigan Department of CommunityHealth and Department of Human Services.



Participants included state health and humanservice agencies, education, academics,mortality review teams, pediatricians, childcare,local communities, breastfeeding advocates,Tomorrow’s Child and others.

Recognizing the diversity of cultures that werebeing brought to the table, a plan wasdeveloped to deal with the dynamics ofdifference as part of the cultural competence ofthe organization. In order to improve the groupdynamics and process, two sub-committeeswere formed: the Data Committee and MessageCommittee. Early in the process, agreementwas reached on guiding principles, amonggroup members:

1) The mutual goal was to save babies’ lives.

2) The messages and interventions must beconsistent with the AAP recommendations.

3) Discussions and recommendations wouldbe evidence-based.

4) Committee interaction would be non-judgmental.

5) The interventions would strive to createpermanent, systems change.

A few members of the Message Committee hadopposing and strongly held beliefs about infantsleep practices. A number of group processstrategies helped manage the conflict andemotionality of the discussion. Most beneficialfor the discussions:

1) The Committee was given a short timeframeof six months to meet and finalizerecommendations.

2) The meetings were held in a friendly, low-key, non-institutional setting that created asense of ‘togetherness’ about the work.

3) Relationships were valued and keymembers worked to build trust in andoutside of the Committee discussions.

4) The core message was a positive statement,not a mandate. The rationale was:– Those with opposing beliefs might

entrench or leave the committee;– A mandate of any sort would estrange

families and providers;– Everyone could agree that the goal was to

save infant lives.

5) A draft core message was presented by thestate health department and then delegatedto the Message Committee for discussion.The rationale included:– Leadership had a birds-eye view of the

issue and would be more objective.– The heat of the debate might be reduced if

the draft was presented by leadership.– The leadership’s authority could be

invoked in order to move the discussion, if necessary.

The core message presented by state healthleadership was: Every Baby Is Placed to Sleep in aSafe Environment (Michigan Department ofCommunity Health, 2004a). With the AAPrecommendations in hand, the MessageCommittee was able to identify fourteendifferent risk factors. The success wasimmediate—they agreed on thirteen of thefourteen factors. Three audiences wereidentified: childcare providers, professionalsand general public. By choosing to start withchildcare providers, the Committee agreed onfourteen of the fourteen risk factors, including astrong statement that infants in child careshould not sleep in an adult bed. With eachsuccessive meeting, the Committee membersgained more confidence in each other and intheir ability to problem-solve. Breastfeedingwas discussed and the Committee unanimouslyand unequivocally agreed to recommend andsupport breastfeeding.

With this carefully planned and executedapproach to managing the dynamics ofdifference, Michigan was able to keep the



diverse key stakeholders in the process anddevelop approaches that respected the diversepersonal, professional and organizationalcultural perspectives of the group. As a result,the complex set of partners needed to create astate-wide integrated system to address SUIDwas able to move forward.

Impacting Professional and InstitutionalCulture in Systems ChangeAs already noted the experience with Back toSleep demonstrated that hospitals had aprofound influence on, and modeled behaviorfor, the new parent. An approach was neededthat understood and respected the cultures ofthe labor and delivery nurses and the hospitalsthat employed them. Engaging thosecommunities was key to understanding theprofessional and institutional cultures that hadcreated the resistance to promoting riskreduction messages. In order to createculturally competent approaches to this issue,Michigan worked with nurses and otherswithin the institutions to understand whatwould influence nursing beliefs and practices.Public health messages designed for familiesand engagement approaches for families wouldnot work with these cultures. Approaches have included training developed by and for nurses in the hospitals and understandingthat in hospital cultures, policy is key tochanging behaviors.

ConclusionThis report has presented arationale for a shift in roles for stateSIDS and Infant Death programsfrom service delivery to leading

systems integration efforts. It has provided thestory of one state—Michigan—in its journey toleading and supporting an integrated systemschange approach to address SUID. Examples of how programs can transform to meet the current complex challenges in addressing risk reduction

and bereavement support within a state areprovided as well as examples of how to achievethese changes in an environment of shrinkingpublic health resources. While each state has adifferent set of potential systems partners and adifferent history, the lessons that Michigan haslearned can be useful to other states including:

• strategic use of the specific roles and strengthsof public and private partners;

• use of professionals with skills in strategicplanning and fundraising/development toaugment the skills of service providers andpublic health professionals;

• use of culturally and linguistically competentapproaches to engage the multiplestakeholders needed to create a statewide,integrated systems change process with theirindividual, community, professional and/orinstitutional cultures;

• use of data to drive collaboration and systems building;

• focus on systems change as the key tosupporting behavior change of individualsand families; and

• use of evaluation and quality feedback toimprove initiatives, point to next steps andprovide data to use with potential funders.

Supporting State Programs for a Paradigm ShiftAs is illustrated in the Michigan journey to anintegrated systems approach, making thisparadigm shift is not easy. If states are topursue it, they will need considerable support.First, and foremost, it is essential that federal,regional and state MCH programs support andpromote the paradigm shift. Promoting theshift entails embracing the philosophy ofintegrated systems to address SUID as well asdemonstrating the will to do so in policies,funding decisions and guidance. Second,resources to support states in making the shiftwill be needed—fiscal, personnel and



knowledge resources. Thus, supporting aparadigm shift will entail identifying newresources and realigning existing resourceswithin the systems context. Finally, there willbe a need for technical support. Those needswill differ among the states, but may include:

• access to expertise and mentoring on systems integration;

• access to information and knowledge aboutsystems building;

• opportunities and fiscal support for trainingand technical assistance to states who pursuesystems integration efforts for SUID;

• opportunities to share knowledge and lessons learned among state entitiesaddressing SUID; and

• support from national and federal programsthat are implemented within states andcommunities in systems building related to SUID.

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Tomorrow’s Child/Michigan SIDS (TC/MS) partners with the Michigan Department of Community Health to administer the Michigan Title V SIDS and OtherInfant Death Program. The mission is to preventinfant mortality and provide support for familieswho have experienced an infant death. TC/MS isMichigan’s designated resource for bereavementservices and a leading source for Infant Safe Sleepand other risk reduction initiatives.

Since its early years as a parent organization, TC/MS has undergone fundamental organization andprogrammatic transformation. Today, TC/MS buildsstrategic partnerships with the private and public

sector to implement an integrated systems changeapproach in addressing SIDS, SUID, and otherinfant deaths. TC/MS accomplishes its work by:

• Engaging broadly representative, diversecommunity partners;

• Creating innovative, evidence-based programsthat respond to the communities served;

• Implementing initiatives across private and publicsystems; and

• Establishing a solid infrastructure that sustainsefforts to reduce infant mortality.

Tomorrow’s Child/Michigan SIDS is a tax-exempt501c3 nonprofit organization incorporated in thestate of Michigan. It is funded in part by the federalTitle V Block Grant for the Michigan Department of Community Health SIDS and Other Infant Death Program.



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Suggested CitationFrank, S. and Bronheim, S. Spring 2007. Building Integrated Systems to Address Sudden UnexpectedInfant Death. Washington, DC: National Center for Cultural Competence, Georgetown UniversityCenter for Child and Human Development.

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