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.

A nationwide survey of financing health-related services for special education students.

The Individuals with Disability Education Act (IDEA) requires state educational systems to provide school-based, health related services (RS). This survey determined the financing arrangements used by states for health-related services for school-aged children with disabilities. A survey was sent to directors of special education, Medicaid, and public health departments in each of the 50 states. Financial patterns for RS were sought at the state level for children ages 3-21 with disabilities for the 1993-1994 school year, the most recent year for which complete financial data were available. Univariate analyses probed the relationship between systems' variables and the extent of Medicaid usage by local education agencies. Respondents reported that schools tapped traditional health resources to supplement educational dollars in paying for related services in schools. Medicaid was by far the most common source with 29 states reporting established mechanisms for recouping Medicaid dollars and 10 states reporting phase-in activities. Seventeen states reported that departments of public health played some role in administration, training, and demonstrations, but only six states provided specific dollars for related services through the department. Use of private insurance was reported sporadically with only one state indicating a specific state-level program. Correlates of increased Medicaid usage were presence of interagency agreements (IAAs) (OR 11.1, p = 0.002), having specific personnel for school-based medical assistance (OR 17.7, p = 0.001), and utilizing school nursing services as a Medicaid optional service (OR 4.2, p = 0.048).

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.

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.

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 infant or young child with developmental delay.

The practitioner should attempt to identify the infant and young child with developmental delay as early as possible, so that appropriate services can be provided. Ongoing surveillance is required, rather than one-time screening. The practitioner should also serve as an advocate for children with developmental delay. He or she should ensure that appropriate services exist within the child's community and that they are readily accessible. This requires ongoing communication not only with the child and the family, but also with schools and community agencies.

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.

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.

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.

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.

The school-age child: putting it all together.

The school-age period offers many opportunities to the pediatrician for creative, interesting evaluations and interventions. Many problems are not apparent in bold colors but rather in muted pastels. Often we are aware of an at-risk status, but let it ride because there are other more acute concerns going on with children in infancy and adolescence. Awareness of the consolidation of growth, the coordination of cognitive and other functions and the establishment of self-awareness and self-esteem during this period should help pediatricians focus their efforts on ensuring that the children's physical, cognitive, and psychological foundations are built firmly and maintained solidly. Far from being a period of "latency," school age is a critical era in the development of children, and pediatricians have a responsibility to participate actively in that development.

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.