Minnesota Title V MCH Needs Assessment Fact Sheets
Children with Special Health Needs
Size of the Problem
As of January 1, 2003, there were just over 200,000 infants and toddlers (birth to age 3) in the state. According to the National Survey of Children with Special Health Care Needs, there are 10,455 children with special health needs under the age of 3 years in Minnesota (6%). On the December 2002 child count, 3,278 infants and toddlers were being served under Part C Early Intervention. 
|Number of Infants and toddlers Served through Early Intervention|
Interagency Early Intervention Committees (IEICs) annually report the early intervention services provided to eligible children within their respective areas. The following chart shows the average number of different early intervention services provided to children through an IFSP on December 1 of each year.
|Average Number of Service Provided per IFSP|
At the June 10, 2004 Federal Interagency Coordinating Council meeting, Lee Grossman, Chair for the Board of the National Autism Society pointed out that the National Institute Health has stated, " Autism is a social, economic and health crisis. " In addition, Autism is a National Emergency." In other words Autism is an epidemic.
- Autism Spectrum Disorder (ASD) occurs in 1 in 250 births
- Currently there are 1 to 1.5 million individuals in the US with ASD.
- It is the Fastest Growing Developmental Disability.
- 10-17% annual growth rate
- 60-90 billion dollar annual cost
- 34 billion dollars added per year
- 90% of the costs are in Adult Services
- Cost of treatment can be reduced by 2/3 with Early Diagnosis and Intervention
- In 10 years the annual cost will be 300-400 billion dollars
In other words, according to Lee Grossman and other researches, ASD will bankrupt our public school system if we don't take action now.
The Maternal and Child Health Bureau defines "children with special health care needs" as "...those children 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." All children with special health care needs do not meet the eligibility criteria to be served through Minnesota's Part C Program.
In 2001, Minnesota ranked 40 th nationally in the percentage of infants and toddlers receiving early intervention services. Minnesota ranked 35 th nationally in the percentage of infants under the age of one year receiving early intervention services.
Meisels and Shonkoff state that two years of intervention prior to school saves $30,000 to $100,000 per child. 
Families' First Experiences with Early Intervention: National Early Intervention Longitudinal Study Report describes several aspects of families' experiences in beginning early intervention services using data from the National Early Intervention Longitudinal Study (NEILS). NEILS is following a nationally representative sample of 3,338 infants and toddlers and their families from the time they enter early intervention services until the children complete kindergarten. The report describes the timing of concerns, diagnosis, and entry into early intervention services, as well as parent perceptions of the identification process, the professionals with whom they interacted, and the resulting plan for goals and services. The findings indicate that the process of entering early intervention services is working well for many families. There also is evidence, however, to suggest that the process does not work equally well for all families and that how well it works is related to characteristics of the child and family.
The percentage of children with disabilities, receiving special education, by race/ethnicity is not proportionate to the percentage of children by race/ethnicity, in the general population.
Troster and Brambring found that motor development in children with blindness was significantly delayed, not only in visually guided skills, such as toy manipulation but also in skill areas that seem independent from vision, such as postural control and sitting. Those authors stress the importance of providing compensatory opportunities for infants with blindness to practice motor skills to curtail developmental delays.
Available research suggests that optimizing the adjustment of chronically ill children requires that we attend not only to their specific medical needs but also to the broader needs of the child-family system. Coordination of medical- and family-related services is thus crucial.
Research shows that growth and development is most rapid in the early years. Learning begins at birth and involves a constant interaction between the child and the environment. A child with a developmental delay may be more limited in his or her ability to interact with the environment than a typically developing child and therefore may not acquire many basic skills. The sooner problems or potential risks are identified, the greater the chance of eliminating or minimizing existing problems or preventing future problems.
Studies confirm the effectiveness of early intervention programs. The Infant Health and Development Program, a national multi-site-study, found that low-birthweight, premature infants who received comprehensive early intervention and preschool services score significantly higher on tests of mental ability, and experience lower mental disability rates compared to children who received only health services. The Early Intervention Collaborative Study found developmental gains after one year of intervention for children with identified disabilities or who were at risk for developmental problems.
Part C of the Individuals with Disabilities Education Act (IDEA) is a federal program designed to provide, facilitate, and coordinate early intervention services for disabled infants, toddlers, and their families.
Interagency Early Intervention Committees (IEICs) have been serving as local interagency infrastructures since 1985. IEICs were the first infrastructure designed by the legislative process requiring collaboration between local agencies to build local systems capacity to address the multiple and complex needs of families.
Health and Human Service agencies and a school district, group of districts, or special education cooperative, along with other early childhood organizations and parents of children with disabilities located in the county or counties make up an Interagency Early Intervention Committee. Currently, there are 96 IEICs throughout Minnesota.
While Part C of IDEA federal funding has been fairly stable, this year Minnesota had a decrease in its funding. Also, many services or programs serving children with identified disabilities or who were at risk for developmental problems have also seen decreases in funding. This results in fewer resources for serving children with special needs and their families.
The extent to which the needs of the more than 7,000 infants and toddlers with special health care needs in Minnesota who are not eligible for Early Intervention are being met is unknown. Local public health agencies may or may not be involved with these children and their families through the Follow-Along Program. Participation rates in the Follow-Along Program vary significantly by county.
Local public health budgets are experiencing financial pressures. The impact upon programs serving young children with special health needs is unclear.
1. "National Survey of Children
with Special Health Needs." Data Resource Center for Child and Adolescent
Health. 4/15/2004. http://www.kpchr.org/cshcndrc/ [Attn: Non-MDH Link]
2. Minnesota Department of Education, Minnesota Part C Annual Performance Report, 2002-2003.
3. Source: U.S. Department of Education, Office of Special Education Programs, Data Analysis System (DANS). Distributed 4-14-03
5. Meisels S. J. & Shonkoff, J. P.. Handbook of Early Childhood Intervention. New York: Cambridge University Press, 1990.
6. Minnesota Department of Education, Minnesota Part B Annual Performance Report, 2002-2003.
7. Troster, H., & Brambring, M. (1993). Early Motor Development in Blind Infants. Journal of Applied Developmental Psychology, 14, 83-106.
8. Perrin, J. M. & Ireys H. T. (1984). Development of Children with a Chronic Illness. Pediatric Clinics of North American, 31, 235-257.
9. Ramey C. T. , Bryant D. M., Wasik B. H., et al.Infant Health and Development Program for low birth weight, premature infants: program elements, family participation, and child intelligence. Pediatrics. 1992 Mar; 89(3):454-65.
10. Shonkoff, J. P. & Phiullips, D. A. (Eds) From Neurons top Neighborhoods: The Science of Early Childhood Development. National Research Council and Institute of Medicine. Washington DC: National Academy Press, 2000.