早期教育2004 healthy childhood model

Infants and Young ChildrenVol.17,No.4,pp.301–317c 2004Lippincott Williams&Wilkins,Inc. Developmental Healthcare Partnerships in InclusiveEarly Childhood Intervention SettingsThe HealthyCHILD ModelStephen J.Bagnato,EdD;Kim Blair,PhD;Julia Slater,MEd;Rhonda McNally,MSN,RN;Jan Mathews,PhD;Barbara Minzenberg,MEdIncreasing numbers of children with a broad range of developmental healthcare problems are being educated in regular classroom settings.Developmental healthcare problems refer to a con-stellation of acute and chronic physical(eg,seizures,asthma,tracheostomy,diabetes),behavioral (eg,aggression,overactivity,atypical behaviors),and developmental needs of young children and their functional implications for learning,adjustment,and wellness in natural,everyday settings.Teachers,especially in early childhood settings(ie,early intervention,Head Start,early care,and education),require collaborative supports from nurses,psychologists,physicians,and inclusion consultants to manage these problems and to help children adjust and progress.Few evidence-based models for partnerships among healthcare providers,such as hospitals,early childhood pro-grams,and schools,exist to guide systems reform efforts to provide such supports.We present a description of a5-year,federally funded and field-validated model for collaborative developmental healthcare support in education,HealthyCHILD(Collaborative Health Interventions for Learners with Differences).This article overviews the rationale and need for such support,the evidence-based features of the HealthyCHILD model,brief case vignettes illustrating its operation,and im-plications and recommendations for interdisciplinary practice.Key words:chronics conditions, early childhood,healthcare,inclusion,systems reformFrom the Children’s Hospital of Pittsburgh, Pennsylvania,the UCLID Center at the University of Pittsburgh,Pittsburgh,Pa(Dr Bagnato and Mss Slater and McNally);the School Psychology Program, Duquesne University,Pittsburgh,Pa(Dr Blair);the Pittsburgh Public Schools,Pittsburgh,Pa(Dr Mathews);and the Early Childhood and Family Support Services,Allegheny Intermediate Unit, Pittsburgh,Pa(Ms Minzenberg).This article was supported by research funds for faculty and staff activities from the US Department of Edu-cation,Office of Special Education and Rehabilitative Services(PR Award HO23D40013);The Jewish Health-care Foundation of Pittsburgh;and the US Department of Health and Human Services,Maternal and Child Health Bureau(5T73MC00036-06),Leadership Educa-tion in Neurodevelopmental Disabilities.Dr Bagnato and his Early Childhood Partnerships team were hon-ored to be the recipient of the2001University of Pitts-burgh Chancellor’s Distinguished Public Service Award WHAT ARE DEVELOPMENTAL HEALTHCARE PROBLEMS? Developmental healthcare problems refer to any constellation of acute or chronic med-ical,behavioral,and developmental needs of infants,toddlers,and preschool children and whose interplay influences their learning,ad-justment,functional competency,and overallfor their innovative community-based systems reform initiatives associated with HealthyCHILD. Corresponding author:Stephen J.Bagnato,EdD,Chil-dren’s Hospital of Pittsburgh,the UCLID Center at the University of Pittsburgh,Pittsburgh,P A15213(e-mail: steve.bagnato@).301302I NFANTS AND Y OUNG C HILDREN/O CTOBER–D ECEMBER2004wellness in natural,everyday routines such as the home and early care and education settings.Collaborative developmental healthcare support refers to partnerships among ed-ucational and healthcare professionals and agencies that provide direct and consultative medical and positive behavioral supports and interventions to young children,teachers,par-ents,and team members in vivo in everyday school,agency,and home settings.The col-laborative partnerships and support strategies are applied to modify the helping routines of caregivers and the physical environment of the home and classroom so as to promote chil-dren’s healthy development,social behavior, functional capabilities,and overall wellness. The term developmental healthcare under-scores the unique and changing care consid-erations for very young children(0–5years) with acute and chronic conditions in their daily developmental ecology.For example,de-velopmental healthcare considers such fac-tors as the rapidly changing pace toward developmental maturity;the developmental character of children’s social and self-control behaviors;the inappropriateness of categor-ical diagnoses in early childhood(eg,oppo-sitional defiant disorder);the primacy of the parent-child attachment for healthy develop-ment;the impact of the preschool environ-ment on medical conditions(eg,asthma and seizures expressed differently in the class-room),and the need to apply support ser-vices directly in the natural caregiving envi-ronments instead of the clinic or hospital to ef-fectively modify teacher and parent caregiving behaviors and to foster health,coping skills, and wellness in young children.The American Academy of Pediatrics’(AAP) Committee on Children with Disabilities (1999)has published a white paper that iden-tifies the critical role for care coordination in integrating health and other support systems for all children with special healthcare needs. The AAP(1999)defines children with special healthcare needs as,“those who have or are at increased risk for chronic physical,develop-mental,behavioral,or emotional conditions and who require health and related services of a type or amount beyond that required by children generally”(p.978).The medical home concept of the AAP is a model aimed at fostering comprehensive,coordinated,and family centered care for children with special needs(AAP,2002).Few studies to date have researched the efficacy of the medical home model,in general,or its applicability to edu-cation,specifically.HOW MANY CHILDREN HAVE DEVELOPMENTAL HEALTHCARE CONCERNS?Approximately15%to18%(10–13million) of the children in the United States have a chronic medical condition with an associ-ated need for ongoing consultation,support, or technology,and the number is increasing (Lowman,1993;Stein,2001).Prevalence es-timates for children with developmental de-lays and disabilities range from3%to15% and increase with the rise in poverty(Fujiura &Yamaki,2000).Similarly,between15%and 30%of children demonstrate social behav-ior problems that are so challenging as to present barriers to their adjustment and suc-cess in preschool and the early primary grades (Cohen&Kaufmann,2000;Knitzer,2000a). The impact of these broad array of“devel-opmental healthcare problems”indicates that public schools,Head Start programs,early in-tervention programs,and early care and edu-cation centers face a crisis in promoting the adjustment,health,functional progress,and general wellness of these and all children in inclusive early learning settings.WHAT ARE SOME DEVELOPMENTAL HEALTHCARE PROBLEMS IN EARLY CHILDHOOD?Infants,toddlers,and preschoolers with both acute and chronic healthcare needs and associated developmental delays/disabilities (eg,cystic fibrosis,cerebral palsy,asthma, genetic syndromes,diabetes,autism,brainDevelopmental Healthcare Partnerships303insults,and mental retardation)often require daily procedures,which include gastrostomy tube feedings,administration of oxygen,neb-ulizer treatments,suctioning a tracheostomy, and monitoring seizure frequencies.Chil-dren dependent on portable ventilators(esti-mates of more than30,000)present a special support problem for education settings and professionals(Nickel&Desch,2000).Pres-choolers with special healthcare needs re-quire attention pertaining to structured pro-cedures for support by teachers,staff,and team members,such as healthcare goal plans, medical care procedures,and emergency guidelines(Lowman,1993).Young children with challenging and atypical behaviors that are expressed as extremes of temperament and problems in self-regulation(eg,attention difficulties and overactivity,aggressive behaviors,severe social withdrawal in autism spectrum,and regulatory disorders)require frequent and on-going consultation by a psychologist or other behavioral support specialist for teacher and parent consultation,environmental modifi-cations,and individual child interventions (Bagnato&Dunst,1998;Herb,Schiffman, McKelvey,Cunningham-DeLuca,&Hawver, 2001;Knitzer,2000a,2000b;Strain& Hemmeter,1999).Federal court rulings and legislation over the last decade have affirmed,justifiably,the rights of children with medical and behavioral needs in education settings,but have failed to offer the much-needed direction regarding the best approach,reimbursement streams,or the necessary credentialing of staff who de-liver such developmental healthcare support. These unfunded mandates further present a burden for schools and agencies because the issue of the cost of and access to onsite sup-port by licensed consultants,legal liability concerns,the fiscal responsibilities of health maintenance organizations(HMOs),and the provisions of various state nursing practice acts have not been addressed in federal legisla-tion or court rulings(Crocker&Porter,2000; Irving Independent School District vs Tatro, 1984;Katsiyannis&Yell,2000).ARE THERE MODELS FOR DEVELOPMENTAL HEALTHCAREIN EDUCATION?The research literature offers precious few examples of effective or feasible approaches for collaborative developmental healthcare support in nonmedical settings.Individual surveys show that while most parents,teach-ers,and school personnel agree on the child’s need for healthcare support services,few be-lieve that schools and agencies have the neces-sary resources,policies,or procedures to pro-vide such support(Council for Exceptional Children,1998;Heller,Frederick,Best,Dykes, &Cohen,2000);this problem is particularly pressing in early childhood intervention pro-grams,which rarely have access to nursing, psychology,or other medical support that is, at least technically,available in school set-tings,grades K through12.Perhaps the most recent example of a successful and alternative community-based model of comprehensive developmen-tal healthcare support is Healthy Steps (Zuckerman,Kaplan-Sanoff,Parker,&Young, 1997).Healthy Steps uses strategies that target the interplay among parenting,phys-ical health promotion,preventive strategies, early literacy,and developmental progress. Nevertheless,Healthy Steps still requires par-ents to attend appointments with physician providers at hospital,clinic,or community sites and does not address the child’s needs in vivo within everyday settings and routines. Moreover,the program does not address the complex needs of children with chronic conditions.School-based health centers(SBHC)have been portrayed increasingly in the research lit-erature as perhaps the most effective way of improving the health of children and youth, mostly adolescents,through the provision of on-site medical support that targets such high-incidence issues as reducing risk-taking be-haviors,improving school attendance,using preventive strategies,and promoting emo-tional development(American Psychologi-cal Association[APA],1994;Cosmos,2001).304I NFANTS AND Y OUNG C HILDREN/O CTOBER–D ECEMBER2004Despite the high interest in school-based clinics,few controlled studies have exam-ined the efficacy of SBHC,and all have ne-glected the very children who present the most complex and challenging,but relatively low-incidence,healthcare needs—those with chronic medical conditions and developmen-tal delays/disabilities.Yet,federal mandates in the Individuals with Disabilities Education Act(1991)and Americans with Disabilities Act(1992)re-quire children with developmental disabilities and other health impairments to be educated in inclusive education settings with their typi-cal peers under appropriate support services. Palfrey et al(1992)designed and stud-ied the efficacy of a school-linked model (Project School Care)that offered healthcare consultation and direct support to children on portable ventilators.Although the model showed some success,the researchers con-cluded that the provision of multiple services from various agencies to children is neces-sary,even though current school-based ser-vices are typically disjointed,poorly coordi-nated,duplicative,and poorly funded.With the expansion of the HMO movement,reim-bursement for such expensive,off-site care is rarely possible.Studies focusing on school-based approaches to address high-incidence mental or behavioral health needs of children have been more widespread(Cosmos,2001), but no field-validated model has been em-braced by any of the major professional orga-nizations in psychology.Crocker and Porter(2000)present one of the few reviews that have addressed specifi-cally the issue of types of initiatives that em-phasize the inclusion of young children with complex healthcare needs in early childhood settings,including Head Start and child care programs.After reviewing several national ini-tiatives,the authors concluded with a hope-ful note that components of promising and effective programs already exist,but seem to depend greatly on the individual dedica-tion of teachers,parents,and some enlight-ened agencies.Many initiatives serve as model demonstration programs,but most have not collected research data to support the impact and outcomes of their hard work.Young children with challenging and atyp-ical behaviors present an especially perplex-ing problem for parents and teachers in all types of early learning settings including early intervention,Head Start,and early care and education.The complex needs of young chil-dren who are born in low-income,urban set-tings are particularly noteworthy(Black& Krishnakumar,1998;Wandersman&Nation, 1998).Various interdisciplinary researchers and policymakers in the field have advocated for systems reform efforts to integrate be-havioral health and education supports us-ing innovative models(Bagnato,2003;Cohen &Kaufmann,2002;Donahue,Falk,&Provet, 2000;Duckworth et al.,2001;Merrell,2002; Knitzer,2000b).Integration of physical and behavioral health and early intervention ser-vices in work with parents and infants has oc-curred most readily in the context of some Part C programs(Markos-Capps&Godfrey, 1999;Salisbury,2003;Steele,1998).Fur-ther,some studies have examined models to promote a community-based,preventive ap-proach within maternal and child health ser-vices(Margolis et al.,2001).Despite the nu-merous unique,and sometimes successful, state and local initiatives,shortcomings serve as barriers to systems reform efforts that can address specific early childhood needs.A syn-thesis of the literature reveals that the follow-ing barriers require collaboration and brain-storming by policymakers:at-risk definitions to ease and increase access to services and re-imbursement;the integration of health,men-tal health,and education supports;flexibility for a continuum of ongoing,on-site supports to teachers;uniform training and credential-ing of early childhood teachers and behavioral consultants;methods to ensure partnerships with parents;and the fragmentation and dis-parities with the early childhood fields them-selves(Bagnato,2003).Despite the paucity of research in this area, consensus among prominent researchers and policymakers in the medical,mental health, and disability fields exists regarding the policyDevelopmental Healthcare Partnerships305and design features for an innovative,coor-dinated,and comprehensive systems reform model for children with challenging develop-mental,behavioral,and physical health needs (AAP,1999,2002;APA,1994;Melaville& Blank,1994;National Association for the Ed-ucation of Young Children[NAEYC],1994; Stroul,2002).HealthyCHILD(Collaborative Health Inter-ventions for Learners with Differences)is a field-validated,evidence-based model for collaborative developmental healthcare sup-port in early childhood whose design was grounded on this consensus of design features for promoting and integrating medical,behav-ioral health,and education partnerships. WHAT IS HealthyCHILD?HealthyCHILD is an innovative,transage-ncy,and school-linked developmental health-care partnership among Children’s Hospital of Pittsburgh,primary care physicians,and the full array of inclusive early childhood program arrangements in the Pittsburgh region,includ-ing Early Head Start/Head Start,early interven-tion(Parts C and B),early care and education, and school district kindergarten and Title I support programs.The predominant mission of HealthyCHILD is to plan,deliver,and monitor the impact and outcomes of a transagency model for provid-ing developmental healthcare resources and support in the natural school or agency en-vironment of inclusive early childhood class-rooms(also family child care settings)to teachers,parents,and their children with de-velopmental delays/disabilities,chronic medi-cal conditions,and challenging behaviors(eg, extremes in temperament and problems in so-cial and self-regulatory behaviors).The HealthyCHILD model demonstration program research was originally funded by federal and foundation research grants from the US Department of Education,Office of Special Education and Rehabilitative Ser-vices(OSERS),School-Linked Services for Bet-ter Outcomes competition(1994–1998,PR award HO23D40013),and the Jewish Health-care Foundation of Pittsburgh(1995–1997). The evidence-based practices for the Healthy-CHILD model were established during this phase(Bagnato,1999)and undergo current research and refinements with each new inter-agency contractual venture beyond the origi-nal research phase.Currently,HealthyCHILD is administered by the Early Childhood Partnerships program of Children’s Hospital of Pittsburgh and The UCLID Center at the University of Pittsburgh and is directed by the first author(S.J.B.)with a full-time transagency coordinator(J.S.).It has evolved into a school or agency-linked developmental healthcare consultation ven-ture funded by contracts with school dis-tricts,early intervention programs,and Head Start grantees across Pennsylvania and in West Virginia.Currently,HealthyCHILD employs1 full-time nurse,3psychologists,12full-time developmental healthcare consultants,and 1full-time interagency liaison to coordinate and deliver collaborative support services to nearly4000children and families and more than300teachers and staff under6intera-gency contracts.WHAT ARE THE EVIDENCE-BASED PRACTICE FEATURES OF THE HealthyCHILD MODEL?The HealthyCHILD Developmental Health-care Partnership Model consists of3major operational features:The collaborative leader-ship team(COLT);the HealthyCHILD devel-opmental healthcare support team;and the HealthyCHILD service delivery components. These3“core”operational features interact to produce comprehensive and high-quality supports and beneficial outcomes for teach-ers,parents,and children in their natural settings.Collaborative leadership teamSystems reform advocates and researchers have promoted the formulation of COLT (Melaville&Blank,1994)among partner306I NFANTS AND Y OUNG C HILDREN /O CTOBER –D ECEMBER 2004agencies as a structural approach to ensure transagency teamwork and collaborative deci-sion making.HealthyCHILD employs a COLT to structure transagency and transdisciplinary teamwork among 5essential partners in the Pittsburgh region:Pittsburgh Public Schools-Head Start and Model Opportunities for Stu-dents Accessing Inclusive Classrooms (MO-SAIC)Early Intervention Programs;Allegheny Intermediate Unit Early Childhood and Family Support Services-DART ,Head Start and affili-ated early care and education programs;Chil-dren’s Hospital of Pittsburgh/UCLID Center at the University of Pittsburgh;primary care physicians;andparents.Figure 1.Collaborative Leadership Team (COLT)components.The COLT (Fig 1)for HealthyCHILD sets the transagency,organizational structure and ground rules for collaboration and teamwork among the administrators and staff of the partner programs who have agreed to com-mit to various core principles and practices regarding the integration of developmental healthcare support (ie,medical and behav-ioral)with educational practices,and to serve as an advisory and oversight group to the HealthyCHILD team.These recommended practices and performance standards derive from various professional organizations in-cluding Division for Early Childhood (DEC)(Sandall,McLean,&Smith,2000);NAEYCDevelopmental Healthcare Partnerships307(Bredekamp&Copple,1997);Head Start (2000);and the AAP Committee on Children with Disabilities(AAP,1999).Buttressed by interdisciplinary training with HealthyCHILD, each partner agency communicates to its staff that creative modes of practice are sanctioned to meet the complex special healthcare needs of children and their families.The schematic in Figure1illustrates the interrelationships among the COLT oversight group and the members of the transagency team.Central to the functioning of HealthyCHILD are liaisons between the team and the various inclusive programs in the Pittsburgh region.The team consists of specialists(eg,nurse,psycholo-gist,physician),the child’s parent,and a gen-eralist(developmental healthcare consultant with a degree in child development or early childhood education)who provide an array of classroom-based preventive,consultative, and direct supports that address the needs of teachers and staff to care for children with complex developmental healthcare needs. HealthyCHILD developmental healthcare support teamThe primary operational dimension of HealthyCHILD is a mobile developmental healthcare support team composed of a par-ent and professionals from partner agencies who provide a continuum of prevention-to-intervention supports in vivo in early child-hood classroom or other care settings.The developmental healthcare support team is a “metateam”of professionals from cooperating agencies who work in a collaborative manner beyond the boundaries and structures of their own separate agencies.Each professional has transdisciplinary training and experience in medicine,psychology,human services,devel-opmental disabilities,and early childhood spe-cial education.The parent is a central collaborator on the HealthyCHILD team who contributes informa-tion and advice about the child’s medical and behavioral needs and the families’priorities and resources.Through a collaborative process,the devel-opmental healthcare consultant(DHC)as care coordinator on the team ensures that the parent has a coleadership role in deci-sion making.The DHC is a generalist who functions as a liaison to the partner agencies, as a care coordinator with the parent,and as a classroom consultant.In the important classroom consultant role,the DHC supports teachers and other caregivers as they strive to prevent or accommodate various medical and behavioral crisis incidents.For example,the DHC trains and mentors education staff on universal health precautions and other gen-eral health procedures;and models preven-tive environmental strategies to manage chal-lenging behaviors for all children in the inclusive classroom(Strain&Hammeter, 1999).Our experience and research indicate that nearly80%of most classroom develop-mental healthcare needs and problems can be managed with this type of preventive general-ist consultation.The specialists on the HealthyCHILD team focus on2types of developmental healthcare problems in the classroom:physical health (eg,seizures,asthma,technology needs)and behavioral health(eg,extremes in tempera-ment and problems in learning social skills and self-regulation;early detection of autism spectrum disorder and other atypical diffi-culties),which require collaborative referrals, parent consents,and individualized interven-tions in about20%of the instances.The pediatric nurse on the mobile team has training in chronic medical conditions and is skilled in delivering both consulta-tive and direct service supports in commu-nity and classroom settings.The nurse works with the parent,DHC,and teacher to design a Developmental Healthcare Resource Plan (DHRP),an addendum to the Individual Ed-ucation Plan/Individual Family Service Plan (IEP/IFSP),to collaboratively establish and work to accomplish specific medical goals for the child.Through a graduated mentoring process,the nurse trains the teacher to apply the healthcare procedures in the plan(ie,use of a nebulizer),monitors the teacher’s prac-tices,conducts both“on the spot,”booster, and formal in-service training,and shares legal308I NFANTS AND Y OUNG C HILDREN/O CTOBER–D ECEMBER2004liability for the delivery of healthcare services by a nonhealthcare professional.Essential liai-son roles for the nurse are to collaborate with the child’s primary care physician,to reach consensus on the goals and procedures in the DHRP,and to gain the physician’s signature to formalize the implementation of the plan in the preschool.The psychologist on the team is typi-cally a school psychologist who has train-ing and experience in developmentally appro-priate practices in early childhood(Bagnato, Neisworth,Paget,&Kovaleski,1987).The psychologist functions in a manner similar to the nurse by training teachers in prevention strategies for challenging behaviors in collab-oration with the DHC.With parent consent, the psychologist partners with the parent and the teacher to design a DHRP that emphasizes goals and strategies that promote social and self-control behavior skills and reduces behav-ior problems.The psychologist first models the use of such strategies for the teacher in the classroom,observes the teacher’s practices, and finally fades back to a consultant role. The developmental pediatrician on the HealthyCHILD team is a consultant who par-ticipates in transagency team meetings,re-views healthcare plans,and advises on the medical implications of various strategies.The pediatrician also provides extra-legal and eth-ical coverage for the nurse. HealthyCHILD model service delivery componentsThis section summarizes the essential com-ponents of the HealthyCHILD service delivery model that encompass the recommendations of systems reformers and that increase the probability of positive child,program,family, and interagency outcomes:COLT oversightThe transagency representation,advisory, and liaison functions empower teachers, other education professionals,health and al-lied health specialists to collaborate under specific policy and practice guidelines.Parent-professional collaborationin care coordinationHealthyCHILD procedures have operationa-lized our family-centered practices so that the parent and the care coordinator are coleaders and cocoordinators of our transagency team. In this role,the care coordinator ensures that the parent’s healthcare concerns and prior-ities are heard and honored by the intera-gency team and that the planning of both con-sultative and direct support services in the DHRP to the child and teachers are collabora-tively designed by the parent and profession-als through a consensus process-collaborative consultation and problem solving(Pugach& Johnson,1995).Transagency/transdisciplinary teamworkThe COLT process and the mobile team model enable professionals from2or more agencies to coordinate and share their work routines and roles in a flexible manner to ac-commodate best the needs of the child and the preferences of the family.For example, the nurse and psychologist consult with the teacher on a daily or weekly basis to enable her to eventually manage directly the child’s physical and behavioral health needs,for ex-ample,in the instance of a child with a seizure disorder,and inattentive,overactive,and ag-gressive behaviors.Transagency liaison and communicationHealthyCHILD and the agency(eg,Head Start)each designate a liaison coordinator both of whom are responsible for maintain-ing,at least,daily communication through cell phone contacts,meetings,and e-mails regard-ing the needs in each classroom or region and upcoming referrals on children who need in-dividualized supports.Mobile developmental healthcare team The mobile team of specialists and a generalist travel to deliver a continuum of prevention-to-intervention supports only。