Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Special Needs Are Identified Early

Summer 2004

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Size of the Problem

There were more than 200,000 infants and toddlers (birth to age 3) in Minnesota in 2003.

At early childhood pre-school screening, approximately 15% of children demonstrated a need for further evaluation. Five percent were first identified at pre-school screening as needing special education services.

Of the nearly 67,000 infants and toddlers eligible for screening through Child and Teen Checkups Program, approximately 24,000 were never screened.[1]

In a national survey, substantial variability in surveillance and screening practices were found among pediatricians and family physicians.[2]

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; 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.

Econ. Dev. Region

FAP Participants 7/1/2003

Birth to Three Population

Percent of Birth to Three in FAP






















































With early recognition of developmental delays, children are more likely to receive early intervention services. Meisels and Shonkoff state that two years of intervention prior to school saves $30,000 to $100,000 per child (1990).[3]

Without the use of a screening tool 70% of children with developmental disabilities would not be identified[4] and 80% of children with mental health problems would not be identified.[5] However with the use of appropriate screening tools, 70% to 80% of children with developmental disabilities are correctly identified [6] and 80% to 90% of

children with mental health problems are correctly identified[7]

Many families are ineligible, unable or unwilling to participate in traditional center-based or home visiting screening programs due to cultural or value differences, lack of time, inability to take time off from work, child care for other children, or these programs are viewed as invasive or intrusive.

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

Many agencies have experienced funding cutbacks and some have moved from doing universal tracking to tracking children with risk factors.


The early identification of children with special health needs is a low cost strategy to (1) improve the lives of children and their families, (2) reduce risks and (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.

A tracking or monitoring program 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 have 4 or more children eligible for Part C per 1000 than those counties that do not have a tracking program.[8]

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.

The Follow Along Program is managed by local agencies, usually public health, who enroll the children in the program. Ages and Stages Questionnaires (ASQ's) are mailed to the family typically at 4, 8, 12, 16, 20, 24, 30 and 36 months. The parents complete the questionnaire and return it to the local agency for scoring. If the child passes all areas the family receives a letter informing them of the results accompanied by an activity sheet listing things to do with their child to promote learning and development. Those children who do not pass all areas or whose parents express a concern for their child are contacted to discuss the results and the options available to them for follow-up and referral including assessment and evaluation. This strategy saves money and resources more appropriately used for children in need of assessment or interventions.

Participating families were asked to evaluate the Follow-Along program.[9]

1.What do you like about the FAP?
   A. 82% Getting child development information
   B. 79% Finding out where my child is in development
   C. 70% Finding out what normal development is
   D. 56% Getting reassurance about my child's development

2. What actions have you taken as a result of what you have learned?
   A. 65% I am able to assess my child's developmental level
   B. 48% I use toys to teach my child
   C. 40% I am improving my parenting skills
   D. 40% I play more with my child
   E. 38% I talk with my medical provider about health and development concerns


A March of Dimes / Gallup Poll surveyed public perceptions of premature birth. Results suggest that the public does not understand the increased risk for poor health and developmental outcomes sustained by even the most imperiled newborns should they survive.

Currently there are 83 counties and 2 reservations participating in the Follow Along Program. Due to budget cuts 2 counties closed their programs. One county will soon resume the program through another agency. In addition a third of the counties were doing universal tracking. Some of these have returned to tracking only at risk children.

Soon to be added to the Follow Along Program is another series of questionnaires which complements the ASQ called the Ages and Stages Questionnaire - Social Emotional (ASQ-SE which will aid in the early identification of children with social emotional issues. Some agencies will be unable to implement this addition due to funding issues.

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.

1. Center for Medicaid and Medicare Services. "Annual EPSDT Participation Report" US Department of Health and Human Services. 9/10/2002. http://www.cms.hhs.gov/medicaid/epsdt/ep2000.pdf [Attn: Non-MDH Link]
2. Sices L, Feudtner C, McLaughlin J, Drotar D, Williams M. "How do primary care physicians identify young children with developmental delays? A national survey." J Dev Behav Pediatr. 2003 Dec;24(6):409-17.
3. Meisels S. J. & Shonkoff, J. P.. Handbook of Early Childhood Intervention. New York: Cambridge University Press, 1990.
4. Palfrey et al. J PEDS. 1994;111:651-655
5. Lavigne et al. Pediatr. 1993;91:649-655
6. Squires et al, JDBP. 1996;17:420-427
7. Sturner, JDBP . 1991; 12: 51-64
8. Chan, B., Ohnsorg, F., Infants and Young Children "Issues of Part H Program Access in Minnesota", 1999: 12(1) 82-90
9. Hennepin Co. 2000