Approximately four and one half million children have a disability. For many children, their disabilities start early in their lives. One survey found a prevalence of 2.9% in children under six years of age for an activity-limiting chronic disability (Newacheck & McManus, 1988). Some of those who have survived because of advances in medical technology have done so at the cost of sustaining long term disabilities. As an example, some very low birth weight infants suffer from chronic lung disease, deafness, mental retardation or feeding problems. With our improved technical capabilities, the impression has been that the number of children with some degree of limitation is increasing (Newacheck et al., 1984).
Not infrequently these disabilities affect a child's health and development. Their health needs cause children with chronic disabilities to consume a large share of health care resources (Butler et al., 1985; Newacheck & McManus, 1988). Costs have been covered principally by private health insurance, but a substantial number receive Medicaid (Newacheck & McManus, 1988). The type of services required which often may vary include in- and out-patient services as well as allied health services (Jessop & Stein, 1994). The provision of these services has frequently required the participation of a number of programs such as the Regional Perinatal Programs, Supplemental Security Income (SSI), and Early and Periodic Screening Diagnosis and Treatment (EPSDT). Therefore even at a young age just the health care needs of children with disabilities require multiple coordinated services.
However, comprehensive care should address children's developmental needs. These developmental needs have been the impetus for early intervention programs. These programs improve the early development of children at risk or with a disability (Ramey & Ramey, 1992; Shonkoff & Hauser-Cram, 1987). Motivating both health and development interventions is the desire to minimize the impact of those disabilities on the child's development.
Because disabilities affect multiple aspects of a child's life, providing appropriate services at an early age is difficult. Given the child's health and educational needs, the services required are frequently beyond the scope any one agency can provide. To receive comprehensive services, families often have to receive support from more than one agency. As an example, a child with meningomyelocele may receive services financed through Medicaid, the Department of Mental Health and Mental Retardation and/or part H of the Individuals with Disabilities Education Act (IDEA). Typically families of children with disabilities must deal with multiple agencies in their attempts to obtain optimal services.
Frequently agencies dealing with families of children with disabilities have a difficult time defining the boundaries of the services they cover. For instance, many of the services can be viewed as functioning in both the educational and health domains. Therapists including physical, occupational and speech are professionally active in both domains. Furthermore, chronic illnesses can impair cognitive functioning, and developmental disabilities can impact on the health status of a child. Given this situation, many times it is difficult for agencies to categorize their services. Since the way a service is categorized determines who pays for it, this is an important issue. Because both insurance and entitlement programs are under pressure in these times of cost containment, it is important to help them develop equitable criteria by which to determine how to share the service needs of children with disabilities. For this reason this project focused on the boundary between educational and health domains.
The project identifies the types of services that children under three years of age with significant delays or disabilities receive and what funding sources pay for them. To accomplish this, a currently existing source of data collection, the Part H programs of IDEA was used. Congress passed Part H of IDEA to address the coordination of services and the developmental needs of young children with disabilities. The programs are now fully implemented in all states except one. The programs are administered by the departments of Education (21 states), Health (17 states) and Human Services (8 states). In the remaining few states, they are under other assorted agencies including Mental Health and Interagency Councils (Sonnier, 1991). In many states Part H programs increasingly help families to obtain services.
The organizational mandates of the programs are to coordinate services and to help the families and care providers develop Individualized Family Service Plans (IFSP). this causes the programs to have a broad view of services crossing several agencies regardless of the lead agency. In fact, in funding the programs, it was anticipated that both publicly and privately financed health insurance programs would contribute to the financial support required in these programs (Sonnier, 1991). This includes both educational and health services, such as physical, occupational and speech and language therapies. In addition to developmental instruction, the programs coordinate and sometimes pay for speech, language and hearing therapy, physical and occupational therapy, diagnostic medical services, respite care, social and psychological services, and assistive technologies. By coordinating services, the Part H IDEA programs frequently determine who is responsible for what services. This places the programs in an excellent position to collect data on the types of services available to families of young children with disabilities.
In the State of Tennessee the Part H program is the Tennessee Early Intervention System. TEIS identifies most children under three years of age with evidence of significant developmental delay, or who have a condition putting them at high risk for developmental delays. TEIS provides service coordination as well as services identified. TEIS is also the payer of last resort. The information this process has generated provided unique access to most of the children in Tennessee under the age of three years with significant disabilities.
Existing studies have examined these programs from either an educational or a health perspective. The former survey intervention programs to determine the cost of the programs (Escobar, Barnett & Goetze, 1994). The health perspective surveys public and private health insurers as to which services are included in their coverage (Fox et al., 1992). Escobar et al. (1994) found that the factors that had the greatest influence on cost were program duration, frequency of service, staff-child ratio, geographic location and volunteer resources. Unfortunately the study did not examine variations in the children such as diagnosis, variations in the types of service required or the sources of payment. Fox et al. found that some of the ancillary services were covered by health insurance companies but by only about half of the Medicaid programs and that, while they were covered by about three quarters of the private insurers, coverage was limited in many companies to the restoration of lost functions. The major limitation of this study was that it determined the companies stated benefits, and did not examine actual reimbursements.
The relationship between the health and educational domains has been further complicated by health reform. Current studies and impressions suggest that there are both positive and negative effects of managed care on children with special needs (Cartland & Yudkowsky, 1992; Fox et al., 1993; Newacheck et al., 1994). The state of Tennessee was one of the first states to implement significant comprehensive health reform on its own moving towards a managed care system. The full implementation of a total reform of Medicaid to a managed care system occurred in the second year studied in this project. This allowed us the unique opportunity to collect information from a fully functional statewide Part H IDEA program functioning in an environment that has undergone health reform to a managed care system.
Even prior to the changes in the systems described above, it was not always clear if or how the participation of different agencies was coordinated. Many times decisions appeared to be very individualized depending on the family, the programs, the child's diagnosis, and the type of services requested. With the need to control expenses, there is added pressure on each of the agencies to try to limit their expenses and only to provide those services for which they are clearly obligated. TEIS has had the experience of trying to address these issues for the past two years. Reviewing their experience through the process of examining their data collected rigorously on a statewide basis provided some insight into what factors affect the decision about who should pay for what services.
Therefore, the goal of this project was to better identify what services are provided to young children with disabilities and what factors affect how they are financed. This was accomplished by the following: (1) identifying the services received by children with chronic disabilities who are age 36 months and under; (2) identifying who paid for those services; and (3) identifying how factors such as referral sources, diagnosis, types of service, health insurance coverage, socioeconomic status (SES) and geographical region related to the decisions about what services the children receive and who pays for them.