Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Early Identification and Intervention

Fall 2004

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Size of the Problem

Major advances have been made in understanding the importance of getting children off to a good start in life and enhancing children's growth and development.

In Minnesota there are almost 400,000 children age 0-5 [1]. Early identification/screening and referral systems identify children's strengths and needs in the areas of health, development or other family factors. These systems can minimize adverse health, social, and emotional effects on children and their families and can maximize healthy child development through screening and culturally appropriate evaluation/assessment and early intervention services.

There are 15,812 children identified with special health needs under the age of 4 years in Minnesota [2]. Even though both state and national priorities identify the need to improve the health and readiness of children to learn at school entry through early identification/ screening and referral systems, Minnesota's systems continue to fall short in promoting the health and development of children and their families.

In 2002, Minnesota served 3,283 (1.63%) infants and toddlers through Part C of the Individuals with Disabilities Education Act (IDEA); a federal program designed to provide, facilitate, and coordinate early intervention services for disabled infants, toddlers, and their families.

Seriousness

Minnesota has a variety of early identification/screening and referral systems; however, these systems continue to fall short in promoting the health and development of children and their families. Some of these programs include:

  • Well- Child Care/ Child and Teen Checkups - National data indicate that more than one quarter of US children (< 18 years) do not receive the American Academy of Pediatrics-recommended visits for well-child care [3]. Of the nearly 67,000 infants and toddlers eligible for screening through the Minnesota Child & Teen Checkups Program, approximately 24,000 were never screened [4].
  • In a national survey, substantial variability in surveillance and screening practices were found among pediatricians and family physicians [5]. Without the use of a screening tool, 70% of children with developmental disabilities would not be identified [6] and 80% of children with mental health problems would not be identified [7]. However with the use of appropriate screening tools, 70% to 80% of children with developmental disabilities are correctly identified [8] and 80% to 90% of children with mental health problems are correctly identified [9].
  • Universal Newborn Hearing Screening - It is estimated that 200 Minnesota infants, or 4 per week, are born each year with hearing loss [10]. Costs for children's special education services are increased if hearing loss is not detected early. It is estimated that when hearing loss is not identified early and early intervention is not received, a child with hearing loss will cost schools an additional $420,000 due to special education needs [11].
  • Minnesota's Early Childhood Screening Program ( ECS) - Administered by the Department of Education, this program screens all children prior to kindergarten for risk factors related to health, development, and family circumstances that may interfere with their learning, growth, and development. The numbers of children referred for further assessment has increased each year from 11.2% in 1996 to almost 15% in FY 2003. Minnesota Department of Education 2003 referral data indicates that 18,326 new potential problems were identified in vision (2,506), hearing (3,788), speech/language (3,586), cognitive (2,075), fine/gross motor (1,438), social/emotional (1,205), growth (196), immunizations (2,027 not up-to-date), lack of health care coverage (662), and other health concerns (117) [12].

Of the 57,930 children screened through Early Childhood Screening, 8.7% had a primary language other than English [13].

  • Follow-Along Program - Regionally, 7% to 31% (average of 9%) of the birth to three population is screened for developmental delays through the Follow-Along Program.
    • Of the more than 43,000 infants and toddlers enrolled in the Follow-Along Program since its inception in 1991, nearly 31,000 had at least one risk factor linked to poor health and developmental outcomes; 20,000 had at least two risk factors; and 12,250 had three or more risk factors linked to poor health and developmental outcomes.
    • In one year, the Follow-along program identified 3,500 areas of potential developmental concern in program participants.

With early recognition of developmental delays, children are more likely to receive early intervention services. Meisels and Shonkoff (1990) state that two years of intervention prior to school saves $30,000 to $100,000 per child [14].

Children in poor families experience a disproportionate burden of health problems especially related to vision and hearing, behavior, elevated blood lead, and oral health [15]. Early intervention for these children may be particularly important.

Interventions

Studies confirm the effectiveness of early intervention programs. The Infant Health and Development Program, [16] 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 [17] found developmental gains after one year of intervention for children with identified disabilities or who were at risk for developmental problems.

The early identification of children with health and developmental needs is a low cost strategy to (1) improve the lives of children and their families, (2) reduce risks, (3) increase optimal health and development, and (4) prevent the onset of and/or reduce the impact of secondary complications of chronic illness or disability.

Promoting guidelines and practices that improve services, systems, and quality of well-child care is one strategy to improve the early childhood early identification system. Well-child care saves long term costs by encompassing a variety of health promoting and disease preventing services and by providing opportunities to detect and treat conditions early.

Tracking or monitoring programs for children, especially those at risk for developmental, health or mental health issues, identifies children early and assures referral to appropriate intervention services earlier than traditional one time or sporadic screening of children. Counties with a tracking program identify 4 or more children eligible for Part C per 1000 children compared to those counties that do not have a tracking program [18]. The Follow-Along Program provides one mechanism to assure early and continuous screening through the early childhood years. It is also a method of child find which when combined with other strategies assures a comprehensive child find system.

Particularly during this time of state budget reductions, Minnesota must create a state plan for an Early Childhood Comprehensive Screening/ Intervention System (MECCSS). This plan will encourage service system integration at the state and community level, and foster collaborative partnerships.

Status

The importance of an effective early childhood early identification and intervention system is reflected in current early childhood state and national priorities. These include the Healthy People 2010 goals; State Title V and Minnesota's Negotiated Performance M easures; Healthy Minnesota Public Health Improvement Goals; and a s tate priority that, "all children will enter school healthy and ready to learn" reflected in Minnesota Milestones, a tool developed by the MN State Planning Agency that measures long-term goals and accountability for the state .

The US Maternal and Child Health Bureau has identified early and continuous screening for special health needs for all children as one of the six core outcomes for children with special health care needs. In addition, the Bureau has awarded the Minnesota Department of Health a $100,000 two-year planning grant for the development of an Early Childhood Comprehensive Screening/ Intervention System (MECCSS). This grant is in the beginning of its second year.

Minnesota's public health systems, including all local public health agencies, and tribal governments have programs and strategies that promote access to well-child care such as C&TC Coordinators and PHN home visitors.

Due to cuts in public health programs, some children and families will no longer receive home based services.

Currently there are 83 counties and 2 reservations participating in the Follow-Along Program. Many agencies have experienced funding cutbacks and some have moved from doing universal tracking to targeted tracking (tracking children with risk factors).

Due to changes in funding at the federal and state level, fewer resources are available for serving children with special needs and their families.

Since 1992, Early Childhood Screening is required for entrance in Minnesota's public schools and is offered throughout the year by local districts. As a result, 2, 018 children were served in Early Childhood Special Education; 4,660 referrals were made to School Readiness (an early intervention public school program open to Minnesota children age 3 ½ to 4 years and their families); 4,593 referrals were made to ECFE; 413 referrals were made to Adult Basic Education/family literacy; and 1,280 referrals were made to Head Start [19].

Legislatively mandated Interagency Early Intervention Committees (IEICs) have been addressing the multiple and complex needs of families since 1985. Local health departments, human service agencies, school district(s), special education cooperatives, other early childhood organizations, and parents of children with disabilities make up an IEIC. Currently, there are 96 IEICs throughout Minnesota.


References

1. US Census Bureau. 2000 Census. Online resource: www.census.gov Attn: Non-MDH Link
2. Data Resource Center for Child and Adolescent Health. National Survey of Children with Special Health Needs. 4/15/2004. Online resource: www.kpchr.org/cshcndrc/ Attn: Non-MDH Link
3. Yu, S., Hilary A., Bellamy, H., Kogan, M., Dunbar, J., Schwalberg, H., Schuster, M. (2002). Factors that influence receipt of recommended preventive pediatric health and dental care. Pediatrics, 110(6).
4. Center for Medicaid and Medicare Services. Annual EPSDT Participation Report. US Department of Health and Human Services. 9/10/2002. Online resource: www.cms.hhs.gov/medicaid/epsdt/ep2000.pdf Attn: Non-MDH Link
5. Sices L., Feudtner C., McLaughlin J., Drotar D., Williams M. (2003). How do primary care physicians identify young children with developmental delays? A national survey. Journal of Developmental and Behavioral Pediatrics, 24(6):409-17.
6. Palfrey et al. (1994). J Peds, 111:651-655
7. Lavigne, J., Binns, H., Christoffel, K., Rosenbaum, D., Arend, R., Smith, K., Hayford, J., McGuire, P. (1993). Behavioral and emotional problems among preschool children in pediatric primary care: Prevalence and pediatricians' recognition. Pediatrics, 91(3): 649-655.
8. Squires et al. (1996). Journal of Developmental and Behavioral Pediatrics, 17:420-427.
9. Sturner. (1991). Journal of Developmental and Behavioral Pediatrics, 12: 51-64
10. Minnesota Department of Health Newborn Hearing Screening Program. (2002) Newborn hearing screening program fact sheet. St. Paul: Department of Health. Online resource: www.health.state.mn.us/divs/fh/mch/unhs/resources/factsheet.html
11. Keren R., Helfand M., Homer C., McPhillips H., Lieu, T. (2002). Projected cost-effectiveness of statewide universal newborn hearing screening. Pediatrics, 110(5):855-64.
12. Minnesota Department of Education. Online resource: http://education.state.mn.us/html/intro_screening.html Attn: Non-MDH Link
13. Minnesota Department of Education. Online resource: http://education.state.mn.us/html/intro_screening.html Attn: Non-MDH Link
14. Meisels S. & Shonkoff, J. (1990). Handbook of early childhood intervention. New York: Cambridge University Press.
15. Newacheck, P., Jameson, W., & Halfon, N., (1994). Health status and income: The impact of poverty on child health. Journal of School Health, 65: 229-233.
16. Ramey C., Bryant D., Wasik B. (1992).Infant health and development program for low birth weight, premature infants: Program elements, family participation, and child intelligence. Pediatrics, 89(3):454-65.
17. Shonkoff, J. P. & Phillips, D. A. (Eds) . (2000). From neurons to neighborhoods: The science of early childhood development. National Research Council and Institute of Medicine. Washington DC: National Academy Press.
18. Chan, B., Ohnsorg, F., (1999). Infants and young children. Issues of Part H Program Access in Minnesota, 12(1): 82-90
19. Minnesota Department of Education. Online resource: http://education.state.mn.us/html/intro_screening.html. Attn: Non-MDH Link