Children and Youth with Special Health Needs

Definition:

One in every five Minnesota families with children has at least one child with a special health need. Estimates of children with special health needs in Minnesota range from 160,000 to 200,000.

Children and youth with special health needs are those who have, or who are at increased risk for, a chronic physical, developmental, behavioral, or emotional condition. They also require health and related services of a type or amount beyond that generally required.

This definition is purposely broad, inclusive, and not condition specific. It recognizes that all children and youth with special health needs, regardless of their condition, require a well-functioning, community-based system of resources to reach their full potential.

Our Vision:

To improve population health through building the capacity of all systems that serve families of children and youth with special health needs.

Policy:

Children and Youth with Special Health Needs (CYSHN) works to achieve public health policies that will provide more positive health outcomes and better serve children and youth with special health needs and their families throughout Minnesota. Our programs provide state-level leadership and partner with families and other stakeholders to achieve our vision with emphasis on Quality Improvement in the following areas:

• Family-Centered Care
• Cultural Responsiveness
• Best practices
• Proactive and preventive investment
• Data-driven decision-making

Activities:

In order to enhance positive outcomes for children and youth with special health needs and their families, CYSHN activities in Minnesota include:

• Education: Providing health and related information about specialized services to families of children with or at risk for chronic illnesses and disabilities; and identifying and promoting evidence-based interventions for children and youth with special health needs.
• Follow-Up: Assuring linkage of families with resources and services whose infants have been diagnosed with metabolic or endocrine conditions, infants with confirmed hearing loss, and infants identified with a birth defect.
• Community Partnerships: Technical assistance, specialized consultation, and support for primary care providers, specialty care providers, local public health nurses, and other community agencies who provide services to children and youth with special health needs.
• Public Policy: Engage in the development, coordination, and support of state and local systems for children with special health needs. These systems include Minnesota's Interagency Early Intervention System (Part C) and Minnesota's System of Interagency Coordination (MNSIC). Serve in an advisory capacity to policy-making bodies to assure the interests of children with special health needs are considered.
• Surveillance: Monitor and analyze data of selected populations to identify trends, adequacy and availability of services, and underlying causes of birth defects and conditions identified through newborn screening; monitor the effectiveness of interventions and document health outcomes of children identified with a newborn screening condition or birth defect.

Governance:

Maternal and Child Health Advisory Task Force provides guidance on the health care needs of mothers and children throughout the state of Minnesota. Task Force work includes providing recommendations on preconception health strategies and activities related to supporting children and youth with special health needs.

Newborn Hearing Screening Advisory Committee provides guidance in developing protocols and timelines for screening, rescreening, and diagnostic audiological assessment as well as early intervention services for children who are deaf or hard-of-hearing.

Newborn Screening Advisory Committee provides advice and recommendations concerning tests and treatments for heritable and congenital conditions found in newborns, including making informed recommendations to add new disorders to the newborn screening panel.