Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs


Summer 2004

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Size of the Problem

The Americans with Disabilities Act (ADA) states that it is illegal for a childcare provider to turn down a child with special needs unless they pose an undue hardship.[1] None-the-less, finding a childcare provider poses significant difficulties for some parents of children with special needs.

There are nearly 161,000 children and youth with special health care needs living in Minnesota.[2] Children with special health needs differ from their healthy peers in the realm of childcare in that:

  • Care providers may need specialized training;
  • Environments may need adaptations;
  • The nature of the child's condition may preclude the use of congregate care settings;
  • The need for care may go beyond the typical age for children needing supervision depending on the child's condition.

There are an estimated 133,361 children with special health care needs age 14 years and younger in Minnesota.[3] Having a child with special health care needs is one factor that affects families' childcare options.[4]

The National Survey of Children with Special Health Care Needs asked a number of questions regarding the impact of the child's special needs on parental workforce participation.

These data revealed:

  • The families of 43,430 (27%) children with special needs cut back work hours or left the work force altogether due to the special health needs of the child.
  • More than 16,000 (10.4%) families had someone leave the work force entirely.
  • 35% of those with children under six years of age had their employment affected.
  • 24% of those with children between the ages of six and twelve years had their employment affected.
  • 27% of those with children between the ages of twelve and seventeen years had their employment effected.


The absence of adequate childcare is one impediment to maintaining parental employment. This is also true for parents of children with special health needs.

Families of children with functional limitations are significantly more likely than those without limitations to have employment effected by the child's condition.[5]

  Employment not affected Cutback or stopped working
Functional limitations
Managed by RX meds
Above routine needs /use of services
RX meds AND service use

As such, this impacts not only the child with special health care needs, but their parents and siblings as well.

Compared to the nation as a whole, Minnesotans whose children have functional impairments are more likely to have their employment effected. (50.2% US vs. 57.3 % MN).[6]

As the level of severity of the child's health condition increases, so does the likelihood that a parent's ability to work is adversely effected.[7]


The key to successful inclusion of young children in childcare is providing training, technical assistance, and support to staff. [8]

Project Exceptional MN has a training model to recruit and educate childcare providers on how to include children with disabilities in community childcare settings and school-age childcare settings. The training project has over 100 trainers in multidisciplinary teams across the state. It is affiliated with Fraser Community Services in Minneapolis, which has provided inclusion consultation to child care providers for 10 years. [9]

Minnesota's Interagency Early Intervention Committees have played an important role in supporting the community and Project Exceptional teams to increase successful inclusion of children with disabilities in child care programs.[10]

Finders Keepers is a Special Needs program located within Resources for Child Caring that provides referrals and resources for families in St. Paul.[11]

Child Care Resource and Referral agencies (CCRRs) provide linkages and consumer education. Specifically, they offer training and keep a database on child care providers.[12]

A course designed for anyone caring for children with special health care needs is available through St. Cloud Technical College. It provides basic information on a variety of medical disabilities and how these issues affect a child's care.[13]

Healthy Child Care Minnesota is part of a national campaign, Healthy Child Care America. In addition to supporting and promoting quality child care practices, the Healthy Child Care Minnesota campaign is also working with multiple state initiatives in identifying and supporting successful inclusion practices for children with special health, medical and/or behavior needs.

Clear communication between parent and childcare provider as to the child's needs, parental expectations and provider capacity is essential. Advocacy skills training which includes information on describing the child's needs and activities and improving parents' negotiation skills is available through PACER Center.


Healthy Childcare America is a campaign that began in 1995 in a collaborative effort between the Federal Child Care Bureau, Maternal Child Health Department and the American Academy of Pediatrics to identify and promote quality childcare practices nationally. Healthy Childcare Minnesota is a partnership between the Minnesota Department of Children, Families and Learning and the Minnesota Department of Health.

Although there are a variety of community supports for children with special needs, and support at both the state and federal levels, there continues to be a lack of accessible, focused supports for children with special health care needs who need childcare.

1. Olen, LuAnn, Your Link. "Finders Keepers" Winter 2000.
2. SOURCE: Centers for Disease Control and Prevention, National Center for Health Statistics, State and Local Area Integrated Telephone Survey,2001
3. ibid
4. Wilder Research Center. "Child Care Use in Minnesota Statewide Survey of Households". Minnesota Department of Children, Families and Learning. January 2001.
5. ibid
6. ibid
7. ibid
8. Bruder, Mary Beth, National Child Care Information Center. Child Care Bulletin, Inclusion child-care--Quality Child Care for all Children. Issue 21.
9. Bentley, Christine. Your Link. "Inclusion Consultation Services" Winter 2000.
10. Croft, Cindy. Your Link. "Project Exceptional"Winter 2000.
11. Ibiden
12. Fogolin, Karen. Your Link. "Child Care Respource and Referral" Winter 2000.
13. Hahn, Michelle, Mertin, Sylvia. Your Link. Caring for Children with Special Health Needs. Winter 2000.