TIMES are changing for children with special healthcare needs and their families, and the systems for providing care in the United States over the past century reflect these changes. According to the Maternal and Child Health Bureau (MCHB) definition, which was later adopted by the American Academy of Pediatrics (AAP), “children with special healthcare needs are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally” (McPherson, Arango, & Fox, 1998). Conditions that once caused the deaths of infants and children have been greatly reduced because of increased regulations and improvements in healthcare, infectious disease control, sanitation, and housing. However, other sources of health problems such as asthma, sensory deficits, and various mental and nervous system disorders have not declined and still contribute to the size of the population of children with special healthcare needs (Newacheck & Taylor, 1992). There are limited data on the actual size of the population of children with special healthcare needs, with estimates ranging from less than 1% in Georgia, to 7.11% in California (Cohen, 1994), to 13% nationally (Blumberg et al., 2001; U.S. Department of Health and Human Services, 2004), and 18% nationally, as the largest reported estimate (Newacheck et al. 1998). Markos-Capps and Godfrey (1999) reported that a study of children with special healthcare needs represented less than 5% of the children enrolled in day care centers.
The purpose of this study was to obtain preliminary data comparing service coordination for children with complex healthcare needs (CHCN) to children with uncomplicated developmental delays (UDD), as provided through an early intervention (EI) system of care. For the purpose of this study, the children fitting the descriptions of CHCN and UDD were operationally defined as follows:
- CHCN: Children who have or are at risk for a chronic physical or developmental condition and who also require care from 2 or more medical specialists, for example, pulmonologist, cardiologist, neurologist, developmental pediatrician, gastroenterologist, urologist.
- UDD: Children who have uncomplicated developmental delays (eg, speech language delay) and who may also require care from one medical specialist (as described earlier).
The specific aims of the study were as follows:
- To describe the relative prevalence of children on the caseloads of EI service coordinators who have CHCN versus children with UDD.
- To describe the service coordinators' caseloads of children with CHCN in terms of their functional problems.
- To determine whether the EI service coordinators report that children with CHCN receive more intervention services than children with UDD.
- To determine whether service coordinators spend more time on information sharing for children with CHCN than those with UDD.
- To determine whether EI service coordinators perceive that they have sufficient experience and training to feel comfortable coordinating care for children with CHCN.
Because of the dramatic improvements in technologically advanced hospital care and management of premature infants, numerous children who would not have survived 20 years ago are now alive and require a range of medical and therapeutic services. Emsley, Wardle, Sims, Chiswick, and D'Souza (1998) reported that the rate of survival of 2 cohorts of premature infants increased in a 5-year period from 27% to 42%, and the rate of disability in the survivors increased from 38% to 68%. Many of these preterm infants had chronic respiratory, neurological, sensory, feeding, and growth problems, all of which are known to be predictors of poor developmental outcomes. Cohen (1994) and Riley (1994) further described a child with special healthcare needs as one who (1) required health-related or medical interventions to sustain or enhance life functions, (2) had chronic conditions that required assessment or medical intervention and was at risk for emergency procedures, (3) required use of specialized medical equipment to sustain life and prevent injury, and (4) had sensory or motor disabilities. For purposes of our study, the population of children identified as having CHCN was described by the research team as a subset of children included in the definition of “special healthcare needs” as offered by Cohen (1994) and Riley (1994). A distinction was made between the groups of children with “UDD” and “CHCN” (ie, those who have or are at risk for a chronic physical and/or developmental condition, and who also require care from 2 or more medical specialists).
Jackson, Finkler, and Robinson (1992) indicated that service delivery and service coordination have been identified as necessary components of healthcare for children with CHCN (ie, have or at risk for a chronic condition, and requiring care from 2 or more medical specialists). In the context of the EI system of care, service coordinators have been described as “responsible for implementation of the” (Individualized Family Service) “plan, and coordination with other agencies and persons” (Individuals with Disabilities Education Act Amendments of 1997). Jackson, Finkler, and Robinson (1995) conducted an evaluation of service coordination in a project that involved hospitalization of infants and toddlers. They examined the functions of service coordination and the costs associated with providing this service. Seven critical functions, which were identified as common service coordination tasks, were used to calculate the time and cost involved. These functions included determining eligibility, identifying and arranging evaluations, providing support to families, making referrals, exchanging information among service providers, maintaining contact with providers in the community, and developing discharge criteria. Jackson et al. reported that providing family support and sharing information with care providers were the most time-consuming tasks. The actual cost of service coordination time varied depending on the functions that were performed, medical diagnosis, and age, with younger children having greater service coordination needs. Presumably, the youngest children (ie, birth to 3), and those with the greatest number and complexity of health and/or chronic conditions, would be expected to require the most service coordination.
The EI program is currently implemented as a result of amendments to the Individuals with Disabilities Education Act (IDEA). It is a federal, state, and local collaboration that provides care coordination and a range of therapeutic and developmental intervention services to children and their families. Individual states must provide services to children newly born to age 3 with a developmental delay as defined by that state in 1 of the 5 domains of development (cognition, communication, physical, socialemotional, adaptive), and those diagnosed conditions with a high probability of developmental delay. Furthermore, states have the option but are not required to provide service to at-risk children. Intervention at an early age is believed to be necessary so as to lessen the impact of health problems, prevent complications, avoid secondary problems, and promote the optimum in health, function, and quality of life.
Greater numbers of children with CHCN are receiving EI services in the community as opposed to medical settings. The utilization of these community-based EI services and resources by children with CHCN is unknown. Literature describes the methods used for professional development of EI service coordinators, including university coursework, inservice, and on-the-job training, to meet the needs of the EI population. According to Malone, Straka, and Logan (2000), attempts to prepare working professionals are often less effective than desired. There is a limited number of specialized programs or curriculum options to prepare students in critical competency areas such as atypical development and assessment, working with multidisciplinary teams, program development and care coordination (Malone et al., 2000). Unlike early childhood specialists, professionals such as occupational therapists, physical therapists, speech-language pathologists, nurses, and dieticians are trained to provide service throughout the life span, with little opportunity in their programs for specialization in infants and young children (Effgen & Chiarello, 2000).
Setting and participants
Monroe County consists largely of the Rochester metropolitan area, with an urban population of 220,000. Monroe County in its entirety is representative of urban and suburban populations, while the surrounding regions are rural. Cultural minorities, including African Americans, Hispanic Americans, and Native Americans, Amish, Mennonite, Southeast Asian, and Eastern European immigrants, comprise 15% of the region's population, and more than 45% of Rochester residents. The region also offers 7 colleges and universities, which promotes development of a large international community. In New York State, the lead agency for administration of the EI program is the Department of Health. An administrator from Monroe County Department of Health's (MCDoH's) EI Program was contacted and agreed to allow the investigators to solicit impressions of their service coordinators.
The 33 service coordinators in Monroe County were invited to participate in the study. Twenty-three service coordinators completed the questionnaire, representing a 70% response rate. A current, complete list of the 33 authorized Service Coordinators was provided by the MCDoH (lead agency for EI in the county), and all service coordinators were recruited to participate in the study. Twenty participants were directly employed by the MCDoH. Three respondents were service coordinators employed by voluntary agencies and organizations that also provide service coordination, by contractual arrangement, with the MCDoH. Packets of questionnaires were mailed to agency supervisors, who distributed them to service coordinators, and returned those which were completed. The caseloads of service coordinators included children with CHCN, and children with UDD. The questionnaire was developed with case examples of children fitting these definitions, so as to elicit reports of respondents regarding information on caseloads, service delivery, the participants' perceptions of their training and clinical experience, and perception of comfort in meeting the needs of children with CHCN. The classification of children into 2 groups was described with the use of 2 case examples. These case examples were developed (with adaptations) using actual children served by an author of the questionnaire, so as to create a categorical distinction between the groups (ie, children with CHCN and children with UDD). The following were the case examples developed for our questionnaire:
Child with CHCNs
“Joey” (name has been changed) is a 2-year-old boy with spastic quadriplegia and a visual impairment. He is followed by a neurologist because of a seizure disorder and a gastroenterologist because of reflux. He was recently hospitalized because of respiratory illness requiring intubation and supplementary oxygen and is now seen by a pulmonologist. He receives occupational therapy (OT), physical therapy (PT), speech, special education and services of a teacher of the visually impaired, through EI.
“Samantha” (name has been changed) is a 10-month-old girl, born at 25 weeks gestation. Her neonatal course was complicated by necrotizing enterocolitis, brochopulmonary dysplasia, hearing impairment, cardiac arrest. She receives 8 hours per day of home nursing care in addition to EI services. She continues to be followed by a gastroenterologist, pulmonologist, audiologist, and cardiologist.
Child with UDD
“April” (name has been changed) is a 2-year-old girl who is not yet talking. Her hearing has been found to be normal. April receives speech therapy in her home twice a week and attends a playgroup with her mother once a week.
“Jason” (name has been changed), a 6-month-old boy, was born with a congenital amputation of his right arm below his elbow. He recently received his first prosthesis. He is socially interactive and babbles. He has just learned to sit. OT services were initiated to encourage the use of his right upper extremity.
The initial questionnaire was distributed as a pilot study to a sample of medical center faculty within the Department of Pediatrics. Selected community-based service coordinators were also included in the pilot. The questionnaire was revised and reviewed again, for optimal clarity and ease of use of the questionnaire. The questionnaire was administered using a paper format, with written and categorical responses. Since all service coordinators in Monroe County are English-speaking, the questionnaire was only developed in English.
In New York State, the lead agency for administration of the EI program is the Department of Health. An administrator from MCDoH's EI program was contacted about the study. Because of concerns regarding confidentiality, the Monroe County EI database of child and family information was not available to us, we investigators being from an outside organization. However, administrators agreed to allow the investigators to obtain data and reports of experience from their EI service coordinators. MCDoH has its own directly employed service coordinators, and also have contracts with several voluntary agencies for service coordination. Service coordinators from MCDoH and voluntary agencies were invited to participate. A questionnaire was developed specifically without identifying information such as name or place of employment. Information was requested regarding caseloads, service delivery, the participants' perceptions of the usefulness of their training, clinical experiences, and perception of comfort in meeting the needs of children with CHCN. The questionnaire was initially distributed at a service coordinators' meeting. Additional service coordinators, employed by other agencies and organizations within Monroe County (and contracted through the DoH), were invited to participate in the study through their agency supervisors. The method of distribution (ie, at MCDoH meeting or through supervisors of Monroe county-based agencies) did not influence the directions given to participants. The service coordinators attending the MCDoH meeting received no additional directions for completing the questionnaire; the investigators only distributed the documents.
The majority of analyses performed were done with a focus on examination of differences between children with CHCN and children with UDD. The questionnaire for the service coordinators included questions in which the responses were either continuous or ordinal. To assess whether or not statistically significant differences existed between groups, Wilcoxon-Mann-Whitney tests were used.
Also of interest in this study was the relationship between level of comfort and perception of adequacy of training, both variables that were obtained as ordinal responses in the survey. To determine whether there was an association between level of comfort and perception of adequacy of training, with and without adjusting for years of experience, ordinal logistic regressions were performed.
The data were analyzed using SAS Version 8.2. A nominal significance level of .05 was used throughout.
Disciplines, caseloads, and experience of service coordinators
The EI service coordinators represented the disciplines of special education, social work, speech-language pathology, nursing, OT and PT, psychology, health educators, and health science public administration. The average number of total children on their caseloads was 30.5 (range 4–75). Sixty-five percent of the coordinators reported that their caseloads included no more than 5% of children with CHCN, which is within the range reported nationally (Table 1). Thus, a majority of respondents reported that they were coordinating care for very small numbers of children who met the CHCN definition. The difference between the number of children with CHCN and UDD proved to be highly significant (P = .001). Children with UDD accounted for a large portion of the coordinators' caseloads. Coordinators indicated an average of 3 years of experience with the newly born-to-age 3 population (range 4 months–6 years). Table 1 shows the frequency of reported percentages of children receiving service coordination, with CHCN and UDD.
Sources of care coordination
Sixty-one percent of the respondents reported that children on their caseloads received coordination of care from at least one other agency in addition to EI. Other sources of care coordination reported were primary care physicians, home care agencies, or special clinics.
Functional issues for children with CHCNs
The coordinators were asked to indicate the functional problems of children with CHCN on their caseloads. A majority of the coordinators reported that children with CHCN on their caseloads had oral motor problems and feeding disorders (Table 2). Additional functional problems reported for children with CHCN included the need for enteral feedings and airway management.
Services for children with CHCNs
Service coordinators were asked to describe the average number of hours of service that children with CHCN and children with UDD would receive across these disciplines: OT, PT, speech therapy, special education, teachers of the visually impaired, teachers of the hearing impaired, nutrition, and social work (Table 3). These responses were provided after the service coordinators had reviewed the 4 case examples in the survey itself. They reported their expectation for service type and frequency for children with CHCN and UDD, based upon their experience as service coordinators. Special education services were expected to be utilized most often. Other related services (eg, transportation) and supportive services (eg, psychological services, assistive technology services, etc) were not included in this questionnaire.
Respondents indicated that children with CHCN would receive, on average, 5.15 hours of service per week, while children with UDD would receive, on average, 4.98 hours of service. No significant differences were found between children with CHCN and children with UDD in expected time expenditures by discipline.
The service coordinators were asked to designate the number of specialists involved in a single child's care. Typically, the service coordinators were involved with 1 to 3 specialists such as audiologists and nutritionists for children in either group. No significant difference in the number of specialists involved with the 2 groups of children was found (P = .998).
Physician input to the individualized family service plan
Eighty-three percent of the coordinators indicated that physicians did not provide input into outcomes developed for the Individual Family Service Plan (IFSP), for children with UDD or CHCNs. For the 17% of respondents who indicated physicians provided input to IFSP development, 75% reported that this occurred for less than 5% of the children on their caseloads. Two respondents reported that developmental pediatricians involved with the child's plan of care had provided input to the IFSP.
Time spent on service coordination
Coordinators were asked to report the number of hours per month they spend in coordination activities for children with CHCN and children with UDD. Reports indicated that more time was spent in coordinating services for children with CHCN. Forty-four percent of the respondents indicated that they spend more than 5 hours a month for a child with CHCN. Fourteen percent reported that they spend more than 5 hours per month for a child with UDD. Difference in the time spent achieved close to significant result (P = .052). Inspection of the data revealed that more time was spent per month on children with CHCN. Examples of specific activities of care coordination included attending meetings, making telephone contacts, and sending reports.
The coordinators were asked to indicate the professionals with whom they shared information. For both groups of children, 76% of the respondents indicated that primary care physicians and service providers received information from them. When the frequency of sending information to primary care physicians and service providers was compared for the 2 groups, the coordinators indicated that information was shared more often for children without CHCN. Medical specialists received information on 65% of children with CHCN and 61% of children with developmental delays. None of these differences were statistically significant.
Service coordinator comfort and training preparation for work with CCHCN
The coordinators were asked to indicate the level of comfort with their skills to work with children with CHCN (Table 4). An ordinal scale was used for respondents to indicate their comfort level from 1 (Uncomfortable) to 5 (Very Comfortable). Very comfortable to Comfortable was reported by 43%. Twenty-two percent of the coordinators indicated that they felt Fairly Comfortable. Minimally Comfortable to Uncomfortable were reported by 34% of the coordinators.
An ordinal scale from 1 (Definitely Need More Training) to 5 (Very Well Trained) was used to assign a value to the respondents' perception of the adequacy of their training (Table 4). Twenty-six percent of the coordinators indicated that they felt they were Very Well Trained or Well Trained for work with children with CHCN. The perception of having some training but needing additional training was reported at a 39% level. Those who indicated that they felt they Definitely Need More Training occurred at a 30% level. A total of 73% coordinators reported that they felt the need for additional training.
To determine whether there was an association between level of comfort and perception of adequacy of training, an ordinal logistic regression was done. It was felt that the analysis should be adjusted for years of experience, and this variable was added to the model. It was found that training was a highly significant predictor of comfort (P < .01), and that a positive relationship exists between the 2 variables. Years of experience was found to be nonsignificant.
Methods of training for service coordinators
Because the needs of children with CHCN are likely to require a wide diversity of special skills not commonly acquired in educational programs, we were interested in where the service coordinators received their training. Seventy-eight percent of the participants indicated that on-the-job training was the most important source of skill development, with continuing education (35%) and university course work (26%) of lesser value.
Continuing education needs
The coordinators were asked to indicate their interest in continuing education topics related to children with CHCN. Dealing with family reactions to having a medically fragile family member was a topic of interest to 65% of the coordinators. Families in high-risk settings was a topic of interest to 57%. The coordinators also wanted more information about evaluation tools and procedures, feeding disorders, positioning equipment, adaptive equipment, cultural diversity, interventions for cancer, prosthetic devices, and advocacy.
EI service coordinators who participated in this questionnaire reported their observations of the impact of children with CHCN on their program. Preliminary findings with our small group represented some important information regarding care coordination for young children with complicated healthcare needs in the EI system of care. The largest group of children served, by diagnoses, was developmentally delayed without CHCN. More of the respondents' total time was spent in care coordination services for individual children with CHCNs, when compared with individual children with UDD. However, it was also noted that a majority of children with CHCN (61%) received care coordination services from at least one other source. One respondent spontaneously indicated, “We do not coordinate medical care, we coordinate developmental services.” Presumably, the complete measure of time spent on care coordination for CCHCN is not obtained through this sample of EI service coordinators, due to the variety and complexity of medical care received by these children.
While these results are limited to reports of service coordinators, our findings appear to contradict the commonly held belief that children with CHCN are high users of EI services. The respondents indicated that the expected average level of service provided for children with and without CHCN was similar. Both groups would receive special education most often, followed by speech-language therapy, then OT and PT. There was no significant difference in the expected level of service provided by any discipline for the 2 groups of children. Limitations of the data must be acknowledged; the reports of service coordinators of expected type and frequency of services are not representative of actual service delivery. It was also found that there were no significant differences in the number of specialists involved in the care of children with and without CHCN.
The coordinators indicated that almost two thirds of the children on their caseloads received service coordination services from one or more additional sources. On the surface, this finding suggests duplication in service coordination, but it might also reflect the complexity of coordination that is required for some children. Children with CHCN may require coordination for their medical condition from one source while their developmental needs are coordinated by EI. If the EI service coordinators were responsible for all service coordination, it can be assumed that the resources of the EI program would need to be extended in this area.
The coordinators indicated that the professionals with whom they shared information most often were primary care physicians and EI providers. Physicians' input into development of goals (outcomes) on the IFSP was reported to occur at a low rate. Direct questions regarding the reason for the low rate of participation were not included on the questionnaire; therefore, we cannot offer specific inferences regarding the reasons for the frequency of primary care physician participation in IFSP development.
The respondents were queried about sources of their training for working with children with CHCN, and their perception of the adequacy of their training. On-the-job training was reported to be most important by a majority of the coordinators. In terms of level of comfort with their work with children with CHCN, less than half of the respondents indicated that they had a good to excellent level of comfort. A significant relationship was found between training and comfort level, but not the years of experience. Employers of EI service coordinators should consider incorporating this information into plans for new employee training and experiences.
The results of this questionnaire reflect the EI Service Coordination delivery in Monroe County, with an urban population of 220,000, and a metropolitan population of approximately 1 million. Our findings may be considered representative of a city of similar size. All potential survey respondents were invited to participate, and a response rate of 70% was achieved. Future investigations could replicate the study in a larger city, which would have a potentially larger population of service coordinators to sample from.
In summary, EI service coordinators in this study reported on their program's service delivery and coordination of care to meet the developmental needs of children with CHCN. As with all studies reporting survey data, the findings are limited to the reports of the respondents who agreed to participate, which tend to limit the generalizability of findings. An important outcome of this study was that children with CHCN did not appear to have a substantial impact (as measured by hours and types of service) on the EI program that participated in this study. Children with CHCN were not reported to be the higher users of EI resources than children with UDD. Although the children with CHCN required more time for care coordination, they represented a small proportion of the respondents' caseloads. Service coordinators who received more training reported higher levels of comfort regarding meeting the coordination needs of children with CHCNs. Results indicated the need to further information on the topic.
IMPLICATIONS FOR PRACTICE
This needs assessment was designed to gather preliminary data, to determine if a larger study on service coordination for CCHCN was warranted. Several implications for practice of interest to a multidisciplinary group of professionals can be identified from the results of this study. As the survival rate of children with CHCN is expected to increase, the resources of agencies such as EI will need to be continuously monitored for adequacy of services. As medical technology continues to improve the outcomes for children with CHCN, there will be growing numbers of candidates for intervention services. We found that care coordination for children with CHCN was frequently shared by more than one agency. Care coordination should be carefully evaluated for interagency communication to ensure that neither gaps in care or duplication of services occurs. Future studies may include collaborative research efforts with several systems of care for children with CHCN (ie, EI and medical), accessing system data on services and outcomes. Education and training for professionals who work with infants and toddlers may not be adequate at the university level. On-the-job training and continuing education activities are necessary components to intervention programs for young children with CHCN.
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