Minnesota Title V MCH Needs Assessment Fact Sheets

Children with Special Health Needs

Surveillance and Monitoring

Summer 2004

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Size of the Problem

Traditionally, state programs for children with special health care needs have collected client-specific information on service utilization paid for by the agency.[1]

State Title V programs are now responsible for working with community, state, and federal partners to measure and monitor progress in achieving the six core outcomes relevant to children with special health care needs. The outcomes include:

  • Families are partners in decision making at all levels and are satisfied with the services they receive.
  • All children receive coordinated, ongoing comprehensive care within a medical home.
  • All families of children with special health care needs have adequate private and / or public insurance to pay for the services they need.
  • All children will be screened early and continuously for special health care needs.
  • Community-based systems are organized so families can use them easily.
  • All youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life.

The National Survey of Children with Special Health Care Needs has provided valuable information. Topics include the prevalence of special needs in Minnesota, (an estimated 161,000 children), a description of types of needs, the need for, access to and affordability of health care services and the quality of specific services.

In addition to the prevalence of special health needs in Minnesota, the National Survey of Children with Special Health Needs revealed that approximately 20% of the households with children have a child with special needs. It provided some information on the impact of special health needs on the family.


Few data systems identify people with disabilities as a subpopulation. Disparities need to be identified to plan appropriate public health programs.[2]

The collection of data about each of the six outcomes is necessary for several purposes-identifying the children with special health care needs, reporting outcome results, and guiding state efforts to ensure a comprehensive coordinated system of care. Measurement enables states to make data-based decisions on where to focus efforts as well as how to set short and long term objectives to reach the six outcomes.

In addition to monitoring progress toward achieving these established performance measures, data helps government policymakers, consumers and advocates, researchers, and clinicians make better-informed choices to promote the health status and well being of people with disabilities and children with special health care needs.[3]

Data-based decision making allows states to make wise choices in how to allocate funds by monitoring the extent to which activities achieve the desired results.[4]

Despite the great strides made in identifying children with special health needs and quantifying the issues relevant to the children and their families, there is much that remains unknown:

  • Where are the children with special needs within the state?
  • What differences and similarities exist among children with special needs residing in different geographic regions?
  • Do children from various cultural backgrounds differ in terms of service use and needs?
  • What promising strategies are being implemented that contribute to the well-being of children and youth with special health care needs and their families?


There are a number of public health strategies that have proven effective in answering the questions relevant to children and youth with special health care needs.

The inclusion of a question designed to identify youth with special health needs in the Minnesota Student Survey has provided insight into the similarities and differences between youth with special health needs and their peers. The data have demonstrated the need for mental health services and documented the need for increased attention to school violence in terms of the experiences of students with special health care needs.

"Measuring and Monitoring Community-based Integrated Systems of Care" (M&M) was a project out of Utah State University. A set of indicators was developed to help states measure their progress in achieving the six core outcomes. Through this project, various measurement tools and strategies were identified by states to provide the needed data.

Public Health Surveillance is used to estimate the magnitude of health problems, determine geographic distribution, portray the natural history of a disease or condition, detect epidemics or define problems, generate hypotheses, stimulate research, evaluate control measures, detect changes in health practices and to facilitate planning.

The multidisciplinary field of Health Services Research studies how social factors, financing systems, organizational structures and processes, health technologies, and personal behaviors affect access to health care, the quality and cost of health care, and ultimately our health and well-being. Its research domains are individuals, families, organizations, institutions, communities, and populations. Traditional emphases of health services research are utilization of health care services, financing and access to health care, health care costs, quality of care and patient satisfaction, and health outcomes. New issues in health services research include the social determinants of health, health-related behaviors, disparities in access to care and the impact of health disparities on families and communities.


With few exceptions, public health studies in Minnesota are not designed to include, target and analyze data on children and youth with special health needs as a sub-population.

Local public health agencies and county boards consistently request comparative data relevant to the size of the population at the community level, if the numbers are increasing or decreasing, risk factors, service use and needs.

Departments beyond the purview of public health hold an immense amount of information related to children and youth with special health needs (e.g., education and human services). These data sets are not linked.

The presence of disease registries assists public health agencies in locating individuals with specific conditions. The Minnesota Legislature has historically been reluctant to pass legislation designed to provide individual level data related to health status. Recent legislation to identify newborns with specific conditions - thereby providing a mechanism through which families can be linked to services - suggests that condition specific registries and surveillance systems for specific purposes may be a possibility in the state.

1. Quality Community Managed Care: A Guide for Quality Assurance Measures. School of Public Health. University of Illinois Chicago. http://www.uic.edu/sph/cade/qcmc/ [Attn: Non-MDH Link] 6/19/2004.
2. Disability and Secondary Conditions. Healthy People 2010
3. ibid
4. "Measuring and Monitoring Community-based Systems of Care." Early Intervention Research Institute. Utah State University.