Included but isolated: early intervention programmes provision for children and families with chronic respiratory support needs.

PURPOSE: To measure enrollment of children with mechanical respiratory support needs within the Massachusetts early intervention programmes (EIP) and describe challenges in execution of individual family service plans (IFSPs). METHODS: Mixed methods provided a complementary assessment. Quantitative data were collected in 2005 from the Commonwealth of Massachusetts EIP administrative database as part of a cross-sectional state census. Qualitative data were retrieved from EIP regional coordinators in a key informant focus group. Descriptive statistics were used for quantitative survey data. Audio-recordings were transcribed verbatim and a qualitative, thematic analysis was undertaken. RESULTS: Four hundred and eighty children requiring mechanical respiratory support at the time of EIP enrollment were identified between 1 July 1997 and 1 January 2005. Focus group analysis revealed themes including: (1) barriers to community transition; (2) community expertise and training; (3) interface with medical providers; and (4) the role of web-based resources. Isolation of families emerged as a recurrent and resounding concept, relating to all of the themes. CONCLUSIONS: Findings support the assumption that implementation of IFSPs for the cohort of children with chronic mechanical respiratory support needs in EIPs is challenging. Barriers reflect inconsistent care coordination and practical encumbrances, contributing to the physical and social isolation of these children and their families.

Child health care in changing times.

Unprecedented transformations in the financing and organization of child health care are driving change in the practice of pediatrics at a remarkably fast pace. The health care needs of children also are evolving, reflecting changing disease patterns, new technologies, and shifting socioeconomic and demographic characteristics of children and families. Changes in the financing and organization of child health services catalyzed by managed care and legislative initiatives need to be responded to proactively by the pediatric community. Yet, the anticipated health care needs of children also must be addressed as models for both pediatric training and practice in the future are developed. This article summarizes briefly these changes in health care services and in child health needs, addresses training implications, and discusses several initiatives the pediatric community is undertaking to develop guidelines for training pediatricians for the 21st century.

Use of primary care facilities by patients attending specialty clinics.

The health care patterns of 158 children attending a medical specialty clinic at least twice a year were studied. The families were interviewed about (1) use of a primary care source, (2) continued contact with the referring physician, and (3) perceived health needs. For almost one third of the children, no source of primary care was reported. This group contained a higher percentage of older children and children from the urban center than did the group as a whole. No differences were attributable to insurance coverage. Of patients referred by a primary care provider, 62% were still in contact with that provider, whereas only 20% referred from another hospital-based program were still in touch with that program. Of the children attending specialty clinics 60% had other perceived health needs. Thirty-eight percent of the families reported health problems that they had never discussed with any medical provider. This study indicates that a large proportion of children with frequent attendance at specialty clinics perceive the hospital as the source of all their care. Health planners and providers need to take this patient perception into account as they design and manage programs for chronically ill children.

Providing therapeutic services to children in special educational placements: an analysis of the related services provisions of Public Law 94-142 in five urban school districts.

Using the sample of 1726 special education students from the Collaborative Study of Children With Special Needs, the authors describe the related services being provided to the children and then analyze the relationship between service provision and class placement. Related services are provided in all settings, with a concentration in special schools and special classes. For even the most severely involved children the trade-off with academics is no more than 1 hour per day. It is argued that schools now are major sites of therapeutic service provision for children with special needs.

Health insurance coverage and physician use among children with disabilities: findings from probability samples in five metropolitan areas.

The effect of insurance coverage on physician use for children in the United States who have been identified as disabled by their schools under the provisions of the Education for All Handicapped Children Act (PL 94-142) is examined. The research is based on identically drawn stratified random samples of children from the elementary school special education populations of five large metropolitan school systems. It was found that health insurance coverage was a predictor of whether a disabled child had seen a doctor in the past year even after adjustment for site, family background characteristics, type and severity of childhood disability, and structural access factors (adjusted odds ratio, 1.76, P less than .05); Hispanic children with disabilities were more likely than white children to be without any health insurance (adjusted odds ratio, 3.63; P less than .001), but there was no similar statistically significant difference between blacks and whites; and wide variations persist in scope of insurance payment for care, such that parents of publicly insured children paid out of pocket for only 5% of all physician visits as compared to 30% of visits for the privately insured. Even for children with various low-prevalence disabilities, when privately insured, parents paid out of pocket for 23% of all physician visits. These data help clarify the extent of health insurance coverage among children with disabilities and indicate that insurance remains an important predictor of physician use even though it continues to pay for only certain elements of care.

Infants in a public school system: the indicators of early health and educational need.

The Brookline Early Education Project (BEEP) is a demonstration model in which a public school system in collaboration with a pediatric center has extended teaching and diagnostic services to the earliest days of life. In most cases, enrollment and data collection began three months before the children were born. A comprehensive diagnostic component including health, neurologic, sensory, developmental, and psychological assessments was performed periodically. The present study, the first of several reports, is an analysis of positive indicators of health and developmental need during the first six months of life. At the time of initial surveillance, age 2 weeks, a high yield of physical and demographic findings, along with perinatal stresses, was observed. It was noted that demographic, neurologic, physical, and perinatal stress factors appeared as independent variables. At the three- and six-month checkpoints, there were more overlapping findings between the categories of physical assessment, developmental examination, and neurologic evaluation. Over the six-month period, there was a tendency toward instability of findings: The group of youngsters thought to have special needs at the age of 2 weeks, 3 months, and 6 months differed in composition from each other. Likewise, there was significant flux in membership between the three- and six-month groups with needs. The study may have public policy implications, insofar as early education services should not be constructed to admit only "high-risk newborns" since this would exclude many children whose needs would become manifest later and would take in a number of children falsely identified as in need but with the resiliency to overcome this. The BEEP program has relevance for pediatric practice in demonstrating a component of health care with greater diagnostic and therapeutic responsibility for educational competence in young children.

Technology's children: report of a statewide census of children dependent on medical supports.

In April 1987, a census of children dependent on medical technology was carried out in Massachusetts to determine the one-month point prevalence. All medical and educational providers in the state who were likely to interact with such children were contacted and asked to complete a two-sided data form on youngsters (aged 3 months to 18 years) with tracheostomies, supplementary oxygen, respirators, suctioning, gastric feeding, central venous lines, ostomies, ureteral diversion, urethral catheterization and dialysis. Nearly 1250 children were found meeting these criteria. Capture-recapture analysis set the lower bound for technology dependence at 0.08% of the state's children. An analysis of the organ systems involved showed that 57% of the children had neurologic involvement--13% multisystem, 7% gastrointestinal-metabolic, 4% renal-genitourinary, and 3% musculoskeletal. Less than 1% of the children were reported as having immunologic or "other" disorders. Review of putative etiologies indicated that 45% of the children had congenital anomalies, 33% chronic medical diseases, 9% perinatal conditions, 7% hereditary-genetic disorders, 5% injuries, 2% infections, and 3% "other." The substantial prevalence of technology dependency among children creates challenges at the social, economic, and policy-making levels. It will be important to carry out systematic reporting and monitoring activities throughout time and across sites. This census is an example of one such statewide effort.

The Pediatric Examination of Educational Readiness: validation of an extended observation procedure.

The Pediatric Examination of Educational Readiness (PEER) is a standardized observation system for use by health care professionals. It combines a prekindergarten physical examination with a neurodevelopmental and behavioral assessment. The PEER was field tested on 386 children, of whom 22% revealed a "definite concern" in one area of development or behavior, 8% in two, and 14% in three or more areas. (A concern was a finding that required direct intervention, continuing surveillance or further evaluation.) Children with multiple areas of concern were found to have lower teacher rating scores at the end of kindergarten than those with isolated or no concerns. An observation procedure, such as the PEER, can be a productive part of the pediatric assessment of children entering kindergarten.

Keeping children and families in the center of our concern. Ambulatory Pediatric Association presidential address.

As academic pediatricians, we are easily caught up in the peripheral details of life. Keeping up with the financial demands, the umpteenth credentialing for managed care, the particular needs of our own institutions.

Financing health services in school-based clinics. Do nontraditional programs tap traditional funding sources?

This telephone survey of directors of 50 school-based clinics (SBCs) examined the influence of organizational factors on use of traditional funding sources, such as Medicaid and private insurance. These factors included: initial funding source (Robert Wood Johnson Foundation's School-Based Adolescent Health Care Program vs. comparison), administrative structure, age of clinic, and state Medicaid policy. Results indicated that over half (51%) of the clinics used Medicaid as a funding source to some extent, while fewer (32%) used private insurance. Use of Medicaid and private insurance, however, varied with the initial funding source, administrative structure, and age of the clinic. Initial funding source and age of the clinic were the strongest predictors of Medicaid usage. Barriers to traditional funding sources, as well as methods used to overcome constraints, are discussed. The importance of the link between a nontraditional health care delivery system, the school-based clinic, and the traditional funding sources of Medicaid and private insurance is examined in light of the organizational factors which facilitate this link.

Use and sources of payment for health and community services for children with impaired mobility.

A survey was made of the parents of 380 children whose mobility impairments require the use of a wheelchair, walker, or braces. They were asked about equipment, health services, related services, and family support services used during the previous year. There was extensive use of equipment and traditional medical and health services, such as visits to primary care and specialist physicians; there was moderate use of related health services, such as physical or occupational therapy and child counseling; and there was very little use of community-based family support services, such as respite care, after-school care, homemaker services, and summer camp. The cost of health care, particularly medical specialty care, was defrayed in large part by private insurance and public programs, such as Medicaid and Title V Programs for children with special health care needs, while financial support for related services, such as physical therapy and speech therapy, came largely through the schools. Compared to funding for health and related services, financial aid for community-based family support services is largely lacking.

Health and special education: a study of new developments for handicapped children in five metropolitan communities.

Since the implementation in 1977 of the Education for All Handicapped Children Act (Public Law 94-142), public school systems have provided special education and related services to students with a wide range of handicapping conditions, including some children served previously in hospitals or other institutions. Although the Federal law does not require physician participation in the special education process, it does imply an active new role for the medical care community, both public and private, in helping schools to identify and diagnose children with disabilities and in ensuring that those children have adequate access to health services. This study explores the experience of five nationally dispersed urban school systems in implementing P.L. 94-142, with particular reference to the interaction of physicians and the schools. The findings highlight continued problems with early identification of certain types of childhood handicaps, classification of children's functional disorders, and adequate participation of practicing physicians in the program, especially with regard to developmental and behavioral issues. In addition, inequities in community health services are documented for a substantial number of the children studied. Improved collaboration between the health and education sectors is needed to address these concerns in order to fulfill the intent of national special education policy and to maximize the potentialities of these children and their families.

Health profiles of early adolescent delinquents.

Comparison of the health status of 53 delinquent and 51 nondelinquent boys revealed that 57 percent of the delinquents, as compared with 20 percent of the nondelinquents, had experienced two or more serious adverse health events (such as hospitalization, loss of consciousness, or an automobile accident). Physical examinations revealed many more conditions requiring intervention in the delinquent than in the nondelinquent boys. Major differences in the two groups' use of health care were apparent: 34 percent of the delinquents either had no medical care or had used only the emergency room, as contrasted with only 8 percent of the nondelinquents. An overall health index that was used to compare the two groups remained statistically significant for a subset of 16 pairs matched on socioeconomic indicators. These results do not imply an etiological link between health status and delinquency, but they do suggest a strong de facto link. The recurrent hospitalizations of the delinquent boys, their substantial use of medications, and their episodic use of health care underscore the importance of an awareness on the part of public health personnel of this group's medical status and of the urgent need for adequately planning the health care of all youngsters in the juvenile justice system.

Prevalence of medical technology assistance among children in Massachusetts in 1987 and 1990.

In 1987 and 1990 in Massachusetts, surveys were conducted to determine the size, pattern of distribution, and trends in the population of children assisted by medical technology. The authors obtained an unduplicated count of all Massachusetts children from 3 months to 18 years of age who used one or more of the following: tracheostomy, respirator, oxygen, suctioning, gastrostomy, jejunal or nasogastric feedings, ostomies, urethral catheterization, ureteral diversion, intravenous access, or dialysis. By comparing counts obtained from medical and educational sources, the authors were able to perform a capture-recapture analysis to estimate the overall number of children dependent upon these technologies. The number of children identified in our surveys increased from 1,085 in 1987 to 1,540 in 1990. However, the capture-recapture analysis yielded estimates of 2,147 plus or minus 230 for 1987 and 2,237 plus or minus 131 for 1990. This suggests that the population of children dependent upon medical technology was essentially stable during this period, and that the 42 percent increase in the number of children identified in our survey reflected improved sampling techniques. During the 3 years, shifts in the pattern of technology use were noted, however. Use of oxygen and gastrostomy increased, and urostomy use declined. A change in the age distribution of the children was also documented, with a shift in the preponderence of technology use from 12 to 24 months in 1987 to children in the first year of life in 1990. Using the 1990 estimate and the 1990 U.S. census figures, an overall prevalence estimate of 0.16 percent was calculated. Applying this to the U.S.child population yields an estimate of 101,800 children assisted by medical technology nationwide(assuming comparable technology use in other States). This information will facilitate policy analysis and program planning on regional and national levels for this medically complex group of children.

The emergence of attention deficits in early childhood: a prospective study.

To study the emergence of attention deficits in early childhood, the diagnostic team of an early education program documented the occurrence of poor concentration, distractibility, behavioral disorganization, poor self-monitoring, and overactivity in a group of 174 children followed prospectively from birth to school entry. Persistent attentional problems were identified in 5% of the children; 8% had problems which abated before kindergarten. Over the period from birth to kindergarten, 40% of the preschool youngsters were found to have some attentional indicator, but many of the findings were minor or transient. This study points to (1) the clustering of persistent attentional concerns with other developmental and environmental concerns, (2) the substantial long-term consequences of early attentional problems and (3) the feasibility of early detection of some children with attentional disorders.

Physician familiarity with the educational programs of their special needs patients.

As part of an analysis of health care for children in special education programs, physician familiarity with the educational status and program enrollment of their disabled patients was examined. Telephone interviews were performed with a random sample of 411 of the children's physicians. The majority (70%) of the physicians interviewed professed no knowledge of their patients' current special educational program. Certain physician, child, and family characteristics were associated with physician awareness of the children's programs. These were physician specialty, physician gender, child's disability, and severity of the child's problem. This study suggests that, although some physicians of very involved patients do familiarize themselves with their patients' day-to-day school life, many other physicians are poorly informed about the school activities and functional status of their young patients with disabilities. Better mechanisms are needed to ensure physicians' understanding of these aspects of child health.

Mainstreaming children with handicaps: implications for pediatricians.

The judicial precedents and legislative mandates passed during the past two decades to ensure full appropriate public education for all children have resulted in a movement toward mainstreaming children with a wide range of physical and developmental disabilities into regular education classroom settings. Although some child development and pediatric literature has addressed the effects of these initiatives on the children with handicaps, less attention has been paid to the effect that mainstreaming has on their nondisabled peers in the classroom. As knowledgeable community advocates, pediatricians should be informed about the specifics of the mainstreaming movement. This paper outlines the movement's historical underpinnings, discusses current definitions of "mainstreaming", and briefly reviews the literature on the effects of this policy on classrooms, teachers, and students with and without disabilities. The impact of mainstreaming children with handicaps in regular classroom settings is equivocal, with many studies lacking methodological sophistication to yield reliable and valid data. Results of the few well-designed studies do show, however, that academic and social outcomes for both the handicapped child and for his/her nondisabled peers are consistently better in mainstreamed classrooms where adequate resources have been made available to the child and teacher than in more segregated settings. Furthermore, the literature consistently points out the key role both regular and special education teachers play in successful mainstreamed classrooms. Pediatricians can help families with children with disabilities negotiate the educational system in order to achieve the appropriate classroom placement.

Evaluation of a multidimensional assessment procedure for preschool children.

The Pediatric Examination of Educational Readiness was administered to 386 preschool children to determine whether the predictive value of this instrument could be enhanced by the inclusion of systematic measures of processing efficiency, selective attention, behavioral adaptation, and neuromaturation. Findings on these dimensions, as well as the traditional developmental attainment measure, were consistent with McCarthy cognitive scores. Concerns regarding developmental attainment, processing efficiency, and selective attention were more common in children later found to have weak kindergarten mastery skills. Data analysis revealed minimal redundancy and specific additive effects in this multidimensional assessment. It is concluded that such instruments can contribute to a broader, more integrated diagnostic procedure for behavioral and developmental problems.

Selective hearing screening for young children.

A "selective" hearing screening program was instituted in an early education project. Three-year-old children were deemed "at risk" for mild-to-moderate hearing loss if they met one of the risk criteria established by the Joint Committee on Infant Hearing Screening, if they had recurrent ear infections, or if there was parent or staff concern about the child's hearing. Based on these criteria, 31 per cent of the 228 children in the project were eligible for full audiologic evaluation at a speech and hearing center. The parents of 45 children took advantage of this special evaluation. Twenty-nine per cent of these selected children had some hearing loss documented. The highest yields of abnormal hearing were for children "at risk" because of recurrent ear infections (42%), and parent for educational staff concern (71%).

Project School Care: integrating children assisted by medical technology into educational settings.

The increasing number of children assisted by medical technology in the U.S. has led to a need for systematic planning for the children's care in community settings such as schools. Project School Care in Massachusetts provides consultation to school systems as schools respond to the challenge of integrating children assisted by medical technology into educational settings. The model of practice described includes the step-wise planning process and the ensuing training, enrollment, and monitoring procedures. Implications are explored with particular emphasis on upgrading of skills at all medical and educational levels. More input from school health personnel in administrative decision-making around enrollment of children with special health care needs is recommended. For these children, a health care plan should be incorporated into their Individualized Education Plans and into their school records.