For discussion

January 2016

Children and Youth with Special Health Care Needs in North Dakota

Donene Feist serves as the Director for Family Voices of North Dakota Health Information and Education Center and as a consultant for various projects for Family Voices National. In this position she provides ongoing assistance to families of children with special health needs as they are raising their children with special needs. Additionally she provides technical assistance to professionals and policymakers bringing the family perspective to policy discussions and decisions. She also has past experience as an independent living advocate, assuring equality and an inclusive environment for all persons with disabilities through programs of empowerment, community education and systems change. Donene brings a twenty year commitment to an inclusive society where all are valued, respected, and have an equal opportunity, access, and freedom to choose in all facets of life.

Did you know that nearly 20,000 children and youth in North Dakota have some special health care needs? Children and youth with special health care needs (CYSHCN) as defined by the Federal Maternal and Child Health Bureau (MCHB) are “children [and youth] who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” (McPherson M, Arango P, Fox H, et al.). CYSHCN are a small but significant part of our nation’s and state’s population of children.  Though not well understood by many health plans and policy makers, their experiences reflect how well our systems are performing and should be monitored carefully.

Helping Families – Information and Coordinated Care

One in 5 families have a child with special health care needs and many of those families face a great deal of challenges. Families of CYSHCN require more information and help in order to ensure a health system that works well for their child and family.  Families of CYSHCN need clear and unbiased information about health plan benefits and how to get the covered services for their child, where to go with complaints and appeals, and other available resources that will help them meet their child's needs and to make informed decisions. Therefore, communication among the families and providers is essential. When communication between providers and families becomes a barrier it leaves families with feelings of animosity and isolation.

ND families do not receive family centered care and do not have access to a Medical Home, which is a cultivated partnership between the patient, family, and primary provider in cooperation with specialists and support from the community, for their children. Many families who have CYSHCN struggle to navigate a complicated mix of services from health plans, public programs, and private agencies. Therefore, it is important for families to have family-centered, coordinated care. Coordination of care and communication among providers are essential to ensure quality care. How the organization of the child’s health care, related services and payment is explained and provided is extremely important to include on care plans and when assisting families.

Often, families need help navigating a confusing maze of services. It’s difficult to understand what health insurance pays for, the referral process, and how to appeal decisions. It’s also difficult to understand the eligibility criteria and services that school systems, and state and private agencies can provide. Additionally, it is vital that health services be coordinated with other services important to the child and family. Although some families have a case manager provided by private health insurance, many parents report that they are their child’s care coordinator. This takes many hours a week to coordinate the numerous systems and payers of health care for their children, sometimes with great difficulty. If possible, finding a professional care coordinator may prove to be helpful. Care coordinators understand the range of services available and communicate with one another and the family.

Insurance and Services

Although many services and procedures are done outside the home, many families provide complicated health care procedures, such as suctioning of tracheostomy tubes, managing IV medications, and administering tubal feedings, for their children at home. Many families need more support than they receive now. Unfortunately, the complex health needs of children and youth with severe and often unstable health conditions, are not well met by the current policies of health plans, government programs, and community agencies.

In general, CYSHCN require more health care services than their typical peers and may be more vulnerable and at a disadvantage when they cannot access them. Although having health insurance eliminates some barriers to receiving care, national and state data indicate that health insurance does not necessarily guarantee that CYSHCN will receive all of the care they in fact need.

When looking specifically at uninsured CYSHCN, they are less likely than those who are privately insured to have a primary care provider that they would go when sick or in need of a medical advice about their health; they are also less likely to receive all needed routine and specialty care. Uninsured CYSHCN are more likely than their privately insured counterparts to have an unmet health or dental care need; report difficulty receiving referrals for and accessing specialists, therapy services, and prescription medications; delay or forgo care; report problems with the ease of using health care services; and live in families reporting financial problems or where family members reduce or stop working because of the child’s health care needs (NS-CSHCN 2009/10).

Financial Impact

For many families, medications, travel, transportation costs, including having to decrease employment has a significant financial impact. Research indicates that over 70% of all bankruptcies are due to medical expenses for individuals. The causes of financial hardship for families of CYSHCN are complex and often intertwined. Some relate directly to a lack of health insurance, while others result from underinsurance—the gaps in coverage that result when a public or private insurance policy doesn’t cover all of the services that are medically necessary for a child. Data tells us that ND families have higher out of pocket costs than others across the nation.

Financial hardship is common among all families of CYSHCN — regardless of income.  Families are linked to financial hardship through three interconnected pathways: higher health care costs, higher routine expenses, and the loss of employment income.  (Catalyst Center, Breaking the Link)

A Place to Seek Help - Family Voices of North Dakota

It is vital for families to understand the programs that are available in the state, how they work and who to contact. Family Voices of North Dakota (FVND) is here to help families who are navigating this very complex system. FVND is a statewide health information and education center for families who have children with a special health need or disability from birth to age 26 and for the professionals that serve them. FVND aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through this national network, Family Voices provides families tools to make informed decisions, advocates for improved public and private policies, builds partnerships among professionals and families, and serves as a trusted resource on health care. Through our work, parents become leaders, communities become inclusive, and our children are embraced.

Family Voices of ND, Inc.  
PO Box 163  Edgeley, ND

(McPherson M, Arango P, Fox H, et al.) “A new definition of children with special health care needs”, Pediatrics, 1998; 102: 137 ‐ 140.)
(National Survey of Children with Special Health Care Needs. NS-CSHCN 2009/10). Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved from

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