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Infants and Young ChildrenVol. 17, No. 3, pp. 213–222c© 2004 Lippincott Williams & Wilkins, Inc.

Building a System of Carefor Children With SpecialHealthcare Needs

Richard N. Roberts, PhD; Diane D. Behl, MEd;Adrienne L. Akers, MS

This article describes current efforts to (a) define best practices and desired systems-level out-comes for a system of care for Children with Special Health Care Needs (CSHCN) and their fami-lies; (b) describe the interconnections between Part C early intervention programs and those forCSHCN; and (c) develop measuring and monitoring strategies for implementing a state-level systemfor all CSHCN. The importance of working in partnership with states and family representativeswith respect to defining, measuring, and monitoring progress toward a system of care will be illus-trated through a description of a federally funded Participatory Action Research project. Resultsof the project include the development of national indicators for the 6 performance measures toguide states in their efforts to achieve a system of care. Key words: children with special needs,measuring indicators, system of care

RECENT studies (eg, Newacheck, Hung,Hochstein, & Halfon, 2002; Newacheck

et al., 1998; van Dyck et al., 2002) have sug-gested that as many as 15% of children withinthe birth-to-5 age range (increasing to about18% of children birth through 18) meet thenew federal definition of children with specialhealthcare needs (CSHCN). “Children withspecial healthcare needs are those who haveor are at increased risk for a chronic physical,developmental, behavioral, or emotional con-dition and who also require health and relatedservices of a type or amount beyond thatrequired by children generally” (McPhersonet al., 1998, p. 139). This definition, devel-oped through a consensus process led by thefederal Maternal and Child Health Bureau’s(MCHB) Division of Services for Childrenwith Special Health Care Needs (DSCSHCN),

From the Early Intervention Research Insititute,Utah State University, Logan, Utah.

Corresponding author: Richard N. Roberts, PhD, EarlyIntervention Research Institute, Utah State University,6580 Old Main Hill, Logan, UT 84322 (e-mail: richard.roberts@usa.edu).

has been instrumental in spawning signifi-cant progress in a number of areas for thispopulation such as research, advocacy, andsystems/policy development. This definitionfocuses on services needed for children ratherthan the diagnostic characteristics of chil-dren. In doing so, it leaps over jurisdictionalissues and defines health risk more broadlybased on the concept of inclusion ratherthan exclusion. It recognizes the connectivityamong physical conditions, developmentalprocesses, emotional well-being, and behav-ioral expression of each of these constructsthat goes well beyond the traditional medicalmodel of health (McPherson et al.). Youngchildren who meet this definition mosttypically receive services and supports frommultiple facets of a system of care. A system ofcare as defined by Stroul and Friedman (1986)is a “comprehensive spectrum of . . . healthand other necessary services which are orga-nized into a coordinated network to meet themultiple and changing needs of children andtheir families” (p. 3). For young children withspecial health needs, examples of the com-ponents of a system include families’ homes,community medical and mental health

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clinics, pediatric practices, early interventionprograms, Early and regular Head Start,regular daycare settings, preschools, and thelocal public school.

How do we know whether there is an ef-fective system of care for CSHCN in place?Will we know it when we see it in ac-tion? What constitutes best practice in sucha system and how would it be measuredand monitored as part of an ongoing quality-improvement effort? Given the inclusive na-ture of this broadly defined population, strongpartnerships in systems building and monitor-ing efforts among all the service system com-ponents are necessary. This article providesa brief history of the efforts that have led tothe definition of a system of care for CSHCN.Next, it highlights the relationship betweenstate Title V CSHCN programs and Part C toillustrate some of the challenges families facein connecting with services in a largely frag-mented service system. Finally, it briefly de-scribes a process developed to measure andmonitor a system of care for these childrenand their families.

DEFINING BEST PRACTICE THROUGHPERFORMANCE MEASURES

Over the past 2 decades, the federal DC-SHCN has led a national coalition-buildingprocess to develop consensus on the requiredcomponents of a system of care as well as tobegin the process of ensuring that the sup-ports and services families need are availableand in place for all eligible children. Taken as awhole, these measures identify the attributesof a system of care for CSHCN and their fami-lies (McPherson et al., 1998) and include thefollowing:

1. Families of CSHCN will partner in deci-sion making at all levels and will be sat-isfied with the services they receive.

2. All CSHCN will receive coordinated on-going comprehensive care within a med-ical home.

3. All families of CSHCN will have adequateprivate and/or public insurance to payfor the services they need.

4. All children will be screened earlyand continuously for special healthcareneeds.

5. Community-based service systems willbe organized so that families can usethem easily.

6. All youth with special healthcare needswill receive the services necessary tomake appropriate transitions to all as-pects of adult life, including adult health-care, work, and independence.

With the possible exception of measure 6pertaining to transition to adult life, thesemeasures equally apply to children with spe-cial health needs and those being servedthrough the Individuals with Disabilities Ed-ucation Act’s (IDEA) Part C and B (619)programs.

The history leading to the agreement onthese 6 performance measures stretches overseveral decades. Likewise, changes in thehealthcare system, IDEA, Welfare Reform,Child Care legislation, Children’s Health In-surance Program (CHIP), and Early Head Starthave all continued to modify and refine im-portant components of the service system. Al-though new legislation adds urgency to thetask, the most recent efforts to define a systemof care go back at least to 1987 with SurgeonGeneral Koop’s call to action for a system ofcare for CSHCN and their families. Hutchinsand McPherson (1991) described the neces-sary components of a system of care and sup-port for young children with special needsand their families that serve as the precursorsfor the 6 performance measures that define asystem of care today. Increasingly since thattime, the US Maternal and Child Health Bu-reau’s DCSHCN has focused its resources atthe federal level to ensure that such a systemis in place by the year 2010.

The mandate to develop measuring andmonitoring strategies for a system of carefor this population of children is derivedfrom several sources. Healthy People 2000(now 2010) (Gamm, Hutchinson, Dadney, &Dorsey, 2003) serves as the blueprint throughwhich the US health goals and objectivesare being described and achieved. Objective

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Building a System of Care 215

16.23 in Healthy People 2010 states that bythe year 2010 we will, “increase the propor-tion of territories and states that have servicesystems for children with special needs.” The6 performance measures are now incorpo-rated into the state data reporting systems forthe MCHB Title V block grant report and as in-dicators for HP 2010 Objective 16.23. In addi-tion, 2 major pieces of legislation passed intolaw recently by Congress further define themandate for such a system. The New FreedomInitiative amended by President Bush in 2001describes the current agenda for systems ofcare and support for “Americans with disabili-ties by increasing access to assistive technolo-gies, expanding educational opportunities,increasing the ability of Americans with dis-abilities to integrate into the workforce, andpromoting increased access into daily com-munity life”(prologue to the Act). In addition,one part of the education reform package en-titled “No Child Left Behind”(2001) addressesthe educational supports required for chil-dren with disabilities and special health needsto be successful in school. Together, these 3federal initiatives serve as the legislative andadministrative mandate for systems develop-ment in this arena.

Systems of care for whom?

Ideally, one of the cornerstones of anintegrated system of care would be the as-surance that families at all economic, edu-cational, and risk levels received the sup-ports needed for young children (eg, Kagan,Goffin, & Pritchard, 1995; Roberts, 1999).A safety net provided for families througha well-integrated system would ensure ade-

Figure 1. Continuum of services for children and their families in high-risk conditions.

quate preventative and proactive safeguardsfor families in all areas of child health anddevelopment. A fully integrated, comprehen-sive system does not exist currently in theUnited States, though certain legislative man-dates have begun to pave the way for spe-cific age groups and risk conditions. Part C ofIDEA is one such example for young childrenbirth to 3 years of age. Although IDEA hasbeen mandated legislatively since 1985, widevariability in Part C exists across the UnitedStates with respect to which children qualifyand what services or supports are providedunder its mandate at the state and local lev-els. Roberts, Innocenti, and Goetze (1999) de-veloped a continuum that depicted differentstatewide approaches to the implementationof Part C of IDEA. Was Part C a stand-alone sys-tem for a particular population of children; orwas it a part of a larger system of care for allchildren, some of whom had more obvious de-velopmental risk conditions than did others?The same questions can be asked in describ-ing a system of care for CSHCN and their fam-ilies. The development and description of asystem of care for any group has many par-allels, not the least of which is the overlap-ping definitions for these populations of chil-dren and families who may be eligible in eachof the 2 programs. The concepts described inthe continuum below (Fig 1) are equally ger-mane to both populations.

As depicted in the continuum in Figure 1,the left side of the continuum represents themost restrictive conceptualization of a statesystem—a set of specific services are pro-vided by agencies or private providers withlittle or no coordination. In the center of

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the continuum, a separate, comprehensive,statewide, coordinated system of care andsupport is provided for CSHCN and their fam-ilies through a system of private and publicproviders. On the right, a more universal sys-tem is envisioned in which all children, in-cluding CSHCN, receive services through astatewide comprehensive coordinated systemof private and public providers. A CSHCNsystem defined through the 6 performancemeasures falls between the middle and theright-hand side of this continuum. That is,some measures reflect aspects of systems ofcare and support for all children, while oth-ers are directed specifically to those with spe-cial healthcare needs. Interestingly, it is notthe content of each performance measure thatdefines the need for it to be limited to a par-ticular population of children and families.Rather, the parameters defining the popula-tion along the continuum are more a mat-ter of legislative authority than family andchild need. For example, the need for ad-equate insurance and ongoing, coordinated,pediatric care within the context of a medicalhome concerns all children as well as thosewith special healthcare needs. At present,13.5% of all children in the United States arewithout health insurance. This does not ad-dress the adequacy of coverage but only ifit is present to some degree. (Newachecket al., 1998)

This systems-building continuum and thequestions it poses for systems developmentcan be applied to almost every national ser-vice program for children and families in theUnited States (Roberts & Magrab, 1999). Al-though the specific populations of interestmay differ, the issues in systems building donot. Historically, this situation exists becausethe United States has built its social safetynet one advocacy group at a time, in manycases limiting the role of government to payerand insurer of last resort (Farrow, 1994). His-torically, the one exception has been edu-cation because all children, independent ofcondition or circumstance, have the sameright to a free and appropriate public ed-ucation. In all other areas of support, ser-vices are not an entitlement in the same way

that education is a right. For instance, chil-dren have no right to ongoing healthcare,adequate housing, and safe neighborhoods.Much has been written about how the lackof a unified system for families has resultedin a set of fragmented services and supportsprovided through a patchwork of programs,policies, funding streams, and eligibility re-quirements that vary from state to state andcommunity to community (cf., Kagan et al.,1995; Roberts & Magrab, 1999; Roberts, Rule,& Innocenti, 1998). Direct implications, bothfor systems building and measurement ef-forts in achieving a more universal, integrated,family-centered and user-friendly child/familysupport system, can be measured in cost,family hassle factors, and the achievement ofoutcomes concerned with family and childwell-being. Roberts et al. have described theconsequences of this model of social, health,and educational support to families repre-senting the differences between the US sys-tem and more universal models through thefollowing diagram (Fig 2). Over time in theUnited States, the base of services and sup-ports for families with young children has in-creased (eg, SCHIP, TANF, Early Head Start,Child Care subsidies). As a consequence, the2 models depicted in Figure 2 have movedcloser together as the US federally supportedbase of services has grown. A recent article ap-pearing in the Journal of the American Med-ical Association (Physicians’ Working Group,2003) advocates for a common 1-payer insur-ance system across the United States for allAmericans. Such an initiative would be a ma-jor step toward a more integrated system, asfunding is such a huge component of eligibil-ity requirements for entitlement programs.

How does the administrativerelationship between Part C and CSHCNprograms affect state systems of care?

Two systems that have a direct impact onoutcomes for infants and young children withdevelopmental and health challenges are thestate Title V CSHCN programs and Part C ofIDEA, commonly known as early interven-tion. The issues discussed above affect boththe Part C and CSHCN programs in all states

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Figure 2. Integrated vs nonintegrated models of service delivery.

as they continue to refine issues such as thepopulation served, services provided, fund-ing mechanisms to pay for needed services,and monitoring continuous quality improve-ment (CQI) processes. Even though the major-ity of children who qualify for Part C servicesalso meet the broader definition of CSHCN,the 2 programs operate independently in moststates.

State and federal programs are challengedwith the complexity of defining the system,specifying systems-level outcomes, develop-ing monitoring strategies/appropriate datasources, and tracing funding streams. As manyCSHCN/Part C children and their families re-ceive services from multiple agencies, thecomplexity of these challenges to the statescontinues to grow. For example, at the federallevel, the Part C program receives its legisla-tive mandate, funding, regulations, and mon-itoring through the US Department of Edu-cation; while state Title V CSHCN programs’federal authority comes through the US Ma-ternal and Child Health Bureau, Centers forDisease Control, and Center for Medicare andMedicaid Services. Nearly 50% of states housethe Part C program within the State Depart-ment of Health (DOH)—often within the Ti-tle V CSHCN program. In other states, the

legislative authority, funding streams, and ad-ministrative structure may lie within otherstate departments where neither educationnor health may be responsible for one or moreof these programs (eg, mental health). Evenso, the state and local community-level inter-agency coordinating councils for the Part Cprogram are composed of representatives ofmultiple private and public programs as wellas families of children being served. Thesecouncils address many policies, such as carecoordination, insurance, family involvementin decision making, and access to a medicalhome, which affect both CSHCN and Part C-eligible children.

These multiagency administrative struc-tures demonstrate why it is no small en-deavor to develop and maintain a system ofcare for CSHCN, including Part C-eligible chil-dren, which assures access to appropriate ser-vices across programs for those who meetthe eligibility requirements. These programscover a sizeable number of children and in-volve multiple providers, funding models, andconstituencies in the public and private sec-tors. Policymakers, program staff, and familiesneed a road map to understand the dual sys-tems and ensure that children and their fam-ilies receive the services and supports most

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appropriate for the child’s needs. A road mapof an integrated system of care would definethe available resources and support for fami-lies using these services. To be useful at theplanning, implementation, and monitoringlevels, such a road map would also need a wayto measure current status of programs towardspecified outcomes as well as ways to moni-tor progress over time. Interagency attemptsto coordinate outcomes to be achieved acrossfederal agencies are still very much in their in-fancy. The complexity of this challenge was re-cently illustrated by a report commissioned bythe Federal Interagency Coordinating Council(FICC). The Government Performance and Re-sults Act (GPRA; 1993) requires each federalprogram to specify outcomes to be achievedand benchmarks to assess progress towardthat end. Outcomes for each of the FICC part-ner agencies were compared to determine thedegree of overlap and coordination (Roberts& Hunt, 2001). Little collaboration or coor-dination was evident within the GPRA out-comes to support the desired integrated sys-tem of care described earlier in this article.

Although all states serve some young chil-dren with special needs under the age of3 through state-operated Part C and CSHCNprograms (eg, specialty services through state-operated specialty clinics), data clearly sug-gest that many more children qualify for ei-ther program than are currently being servedthrough the state-sponsored programs alone(cf., Newacheck et al., 1998).

As both Part C and CSHCN programscontinue their systems-building efforts, theneed for these activities to be coordinated isparamount in order for a more integrated sys-tem to emerge. Nowhere is this more impor-tant than for families who are trying to ac-cess the services their children need. At thepresent time, families gaining proficiency inlearning the system in one state find that it is askill not transportable across state lines—thestate-specific nuances require families to be-gin their learning process all over again. In arecent study of the Part C program in Utah,fully 7% of families moved out of state duringthe time their children were enrolled in Part

C (Roberts et al., 1999). The emerging fieldof infant mental health services is another ex-ample of the need for Part C and CSHCN pro-grams to collaborate so that new programsin this area are designed in ways that allowfor easy access by families regardless of theagency with which they may be working.

What principles underlie successfulsystems-building efforts?

Independent of where a particular systemfalls along the continuum (see Fig 1) andwhich of the 6 performance measures is be-ing addressed, we and others have found thatsystems best meet the needs of their intendedaudience to the degree that they share a com-mon set of underlying principles that definehow they will do what they do (eg, Roberts &Magrab, 1999; Roberts, Behl, & Akers, 2003).The 6 principles are the following:

Families are better able to achieve optimaloutcomes when there is a system of supportsavailable to them that is at the same time

1. responsive to family challenges, priori-ties, and strengths;

2. developed in partnership with con-stituents;

3. reflective and respectful of the culturalnorms and practices of the families par-ticipating;

4. accessible to everyone;5. affordable to those who need assistance;

and6. organized and coordinated through col-

laboration so that resources are equi-tably distributed in an efficient and effec-tive manner.

These principles share many commonthemes with the 6 performance measureselaborated for CSHCN and from the organiz-ing framework for guiding the applied re-search in measuring and monitoring strategiesdescribed below.

Principles in action in the measuringand monitoring process

As we have described throughout this arti-cle, CSHCN are served through a number ofdifferent private and public agencies. Each of

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these agencies develops its own requirementsgoverning how and what client-level data arecollected for monitoring and/or quality im-provement purposes. Each agency, office, orprogram knows some things about a givenchild but usually there is no central agencythat has the complete picture. Data ware-housing activities are still relatively rare inwhich all of the data collected across pro-grams for each child using some form of com-mon identifier is housed in a single location(Roberts et al., 2003). The questions askedearlier (how would we know if a system wasworking? and, what changes are needed to im-prove it?) become increasingly more complexas multiple agencies are involved in reportingservices and outcomes for this population.Measuring and Monitoring Community-BasedSystems of Care for Children with SpecialHealth Needs (M&M), a project funded byDSCHSN and awarded to the Early Interven-tion Research Insititute, addressed these 2questions in a very systematic manner usingmany of the principles listed above to guidethis research.

Over the course of a 5-year period, M&Mcollaborated with up to 10 states to (a) de-velop operational definitions (or indicators)of the CSHCN goals; (b) identify current mea-surement strategies and data sources availablewithin national, state, and local systems tomeasure progress; and (c) create new mea-

Table 1. Example of state-level indicators used to measure progress on CSHCN performancemeasures

Performance measure #2: All children with special healthcare needs will receive coordinatedongoing comprehensive care within a medical home

1. % of CSHCN with a regular source of primary medical care through a primary care provider2. % of CSHCN whose regular source of care communicates in a way that is clear and

understandable to the family3. % of parents whose regular source of primary medical care identifies, discusses, and addresses

the comprehensive needs of their child and family4. % of CSHCN whose regular source of primary medical care ensure age-appropriate well-child

check, including vision, hearing, developmental, behavioral/mental health, oral health,newborn screening, immunizations

5. % of parents of CSHCN who receive referrals and assistance from their regular source ofprimary medical care in accessing needed/desired services

surement strategies for reporting on the sta-tus of the broader population of CSHCN. The6 original states collaborated on at least steps aand b while 4 new states have worked specif-ically on step c alone.

The M&M Project used a participatory ac-tion research (PAR) methodology to engagestate CSHCN programs and their partners indeveloping the indicators through which the6 performance measures (see page 5 for list-ing) could be operationalized in such a man-ner that they might be measured using statedata systems to gauge progress (see Table 1for examples of indicators). PAR is a specificform of action research defined as a “partic-ipatory democratic process concerned withdeveloping practical knowing in the pursuitof worthwhile human purposes” (Reason &Bradbury, 2001, p. 1). PAR is related to com-munity action research, which “rests on a ba-sic pattern of interdependency, the contin-uing cycle linking research, capacity build-ing and practice: the ongoing creation ofnew theory, tools and practical know how”(Senge & Scharmer, 2001, p. 248). The pur-pose of using a PAR methodology is to foster“relationships and collaboration among di-verse organizations and among the consul-tants and researchers working with them;creating settings for collective reflection thatenable people from diverse organizations tosee themselves in one another; and leveraging

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progress in individual organizations throughcross-institutional links so as to sustain trans-formative changes that otherwise would dieout”(Senge & Scharmer, p. 238). As such, PARis particularly well suited to the task of devel-oping a measuring and monitoring system forstates because of its democratic principles inwhich each voice at the table counts.

How did PAR work in the M&M stateswith respect to the 6 principles of care?

In each state, the CSHCN program assumeda leadership role and agreed to work closelywith the M&M staff in implementing theproject locally. A team of people representing3 distinct constituent groups was organizedconsisting of parents, private and publicservice providers, and state program lead-ership/data management staff—particularlyearly intervention. At a minimum, state andlocal representation from the following agen-cies was requested: Health, Education, Voca-tional Rehabilitation, Disability, and Medicaidand Family Advocacy groups. By using thismodel, PAR teams represented the constituen-cies that needed to be involved in the plan-ning and program development effort. At thesame time, it fostered the development of newpartnerships among constituents, while beingresponsive to family priorities, strengths, andchallenges. M&M encouraged parent partici-pation by soliciting nominations for parentsfrom a wide variety of parent groups in eachstate and ensuring that parent out-of-pocketexpenses and mileage were reimbursed fortheir participation. Family members played anactive role in developing the indicators for theperformance measures as well as in develop-ing measurement strategies.

A feature of the M&M Project’s PAR pro-cess included a set of agreed-upon rules thatfacilitated the development of this good willin what had the potential for being a divisiverather than a unifying experience. The pri-mary rule in every PAR discussion in the in-dividual and combined state meetings stated,“Everyone in the room is right from his orher own perspective.”Group discussions pro-duced a melding of these perspectives into

a greater understanding of the issues amongthe participants so that the final set of indi-cators reflected the common experience andthe greater understanding of all.

This model allowed each member to beheard. In doing so, it challenged the group tounderstand why any given issue was so im-portant to any one or set of individuals. M&Mstaff, as the facilitators of the group discus-sions, modeled this behavior and ensured thatit became the group norm over time.

It was in this venue that the strength cre-ated through the diversity of the teams be-came apparent. Parents needed to hear theperspectives of providers and state employ-ees, understanding the fiscal constraints thatcan tie the hands of providers. Likewise,providers needed to listen carefully to the pas-sionate perspectives of family members onthe good and bad experiences they have hadwith the service system. Everyone heard andhad the opportunity to respond to the per-spectives of the measurement experts with re-spect to the question, “How can we formu-late indicators in ways that are measurable andcomprehensive?” The participation of repre-sentatives of each of the stakeholder groupsensured that the resulting set of indicatorshad high face, content, and ecological validity.The indicators were created in the cauldronof the discussions of all of the constituentgroups and tested by the fire of the participantprocess.

The M&M indicators were developedthrough a consensus process, which, by itsvery nature, was a political one. The positiveside of this process was that the indicatorshad high face validity with the target groups.That is, family members, service providers,and representatives of various state govern-mental agencies were part of the developmen-tal process. On the other hand, each consti-tuent group had a particular perspectivewith respect to components of the indicatorsthat were particularly important to them.For example, early intervention representa-tives were especially committed to ensuringchildren were screened early (performancemeasure #4) and continuously as well as

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supporting coordination so services can beused easily (performance measure #5). Theend result was a compromise capturing thosenonnegotiable components of the indicatorfor each of these groups. The point of theprocess was to start with the premise that itwas important to define the attributes of eachgoal. How would a state, a pediatric practice,or a family know if they had a medical home?How would states monitor their progress toensure that services and supports wereorganized in ways that families can use themeasily? Thus the indicators gave flesh to theskeleton of the performance measures them-selves and helped to define the construct thatwas represented in each of the 6 performancemeasures. After these constructs had beenagreed upon by the M&M states, the nexttask was to discover the degree to which dataexisted to develop a baseline in monitoringprogress for each indicator (Roberts et al.,2003).

State PAR teams encountered the difficul-ties inherent in describing, measuring, andmonitoring a system of care for a popula-tion of children and families who interactdaily with multiple public and private careproviders. Multiple agencies provide a pre-scribed set of services or supports as well asdata with respect to child progress and sys-tem efficacy. States have multiple examplesof how they are approaching data collec-tion from data warehousing models to inter-agency data teams. The requirements of en-suring compliance with HIPPA have added anadditional level of complexity to the issue ofdata sharing for the purpose of systems mon-itoring. At the federal level, state CSHCN pro-grams are now required to organize their state

plans and report on progress in systems devel-opment in their state Title V Block grant appli-cations through the use of the 6 performancemeasures. The framework for this process andthe results obtained thus far are contained inother work (Roberts et al., 2003).

It has only been very recently (January2003) that states have had access to state-level data gathered and summarized throughthe National Survey of CSHCN families(Newacheck et al., 2002). Given the vari-ables that drove the National Survey (includ-ing cost), the number of questions address-ing any 1 of the 6 performance measureswas limited. Although availability of nationaldata is a major accomplishment that now en-ables states to have comparable data at thestate and national levels, it does not replacethe rich information already potentially avail-able at the state level housed in the variousagency silos. The lack of a comprehensive,integrated systems of care for children withspecial health needs highlights the problemsfaced by states in their mandates to measureand monitor child quality-of-life indicators ineach domain. Children do not live in silosor domains. The challenges, adventures, andmilestones that they and their families face arerarely agency or discipline specific. The fed-eral DCSHN, through the M&M project, hastaken important steps in beginning to definethe scope of the issues involved in using dataas part of an ongoing system change effortin all 59 states and territories. To paraphrasethe astronauts on the Eagle as it landed onthe moon, one small step for measuring, onebig paradigm change in creating a system ofcare for children with special needs and theirfamilies.

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