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Genetic Alliance; Family Voices. Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective. Washington (DC): Genetic Alliance; 2013 Feb.
For most of the 20th century, most congenital organ and systemic problems proved fatal early, so “children and youth with special healthcare needs” – a term that was not fully defined or used until the late 1990s – consisted mostly of those with relatively stable motor, sensory, or neurological conditions2. The Federal Children’s Bureau, established in 1912, was the first government program to formally serve children with these complex, chronic health issues.
The next major development for CYSHCN, and all children and families, occurred more than two decades later, in the form of the Social Security Act of 1935. Through Title V of this Act, the federal government pledged its support to states to extend and improve programs that promote the health of mothers and children. In addition to overall care for women and children, Title V specifically funded services for “crippled children.” (Infectious diseases such as meningitis and polio caused long-term difficulties, so early programs to provide assistance to these children and their families were called Crippled Children’s Programs3.) This set the stage for decades of Title V-funded programs that support core public health functions, such as resource development, capacity and systems building, information dissemination and education, knowledge development, outreach and program linkage, technical assistance to communities, and provider training.
Even with the advent of Title V, into the 1970s, children with special healthcare needs were classified by their particular diagnoses. This led to condition-specific services, benefits, and research priorities. However, as public health and healthcare advanced in the 1970s and 80s, people realized that there are common access, service, and coordination challenges across conditions.
Rather than narrowly defining the needs of children by their disabilities, it became clear that children and youth with special healthcare needs and their families:
Children and youth with special healthcare needs are defined as “those who have or are at 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.”13
Across conditions, CYSHCN require similar types of programs, services, and supports2,4-8. With the new inclusive concept of special needs came a new, cross-disease kind of advocacy organization, including Genetic Alliance and Family Voices.
During the 1980s, the U.S. Surgeon General’s Office and HRSA’s MCHB worked to set up a systems approach to services for CYSHCN and their families 9-11. This means that services – from help with financial issues related to medical costs to after school programs for CYSHCN – were made available to people with similar special health needs, regardless of their diagnoses. While direct services are still provided in many cases, this approach helps reduce duplication of services and promotes understanding and a sense of community across disorders. Parent and family organizations, public programs, professional organizations, elected officials, community leaders, and more came together to create a system that could most efficiently respond to the needs of different families, communities, and cultures.
In 1989, this new model, with an emphasis on partnership, was incorporated into authorizing language for the Title V Maternal and Child Health Services Block Grant. That year, Congress used the Omnibus Budget Reconciliation Act (OBRA)12 to require that Title V programs take leadership roles in helping CYSHCN to achieve family-centered care and family-professional partnerships.
A decade later, the definition of CYSHCN was formalized based on family and consumer needs rather than a specific diagnosis13. The term is not limited to those who qualify for particular programs, and it goes beyond insurance. CYSHCN are a diverse population with a wide range of diagnoses and abilities. Their common denominator is an increased need for services, which they often receive in multiple settings by a variety of professionals and service agencies.
In 2000, MCHB and key stakeholders, including families, state Title V programs, and other national partners, identified six core performance measures for CYSHCN14. These measures represent the essential elements needed for high-quality systems of care for CYSHCN:
Family/professional partnership in decision-making
Coordinated, comprehensive care through a medical home
Adequate health insurance and financing for needed services
Early and continuous screening for special health care needs
Community-based services that are organized for easy use by families
Effective transition to adult health care, work and independence
These performance measures are the standards to which all programs should be held. Better health for individuals, families, and communities depends on achieving these measures.
To date, programs have made strides toward realizing these performance measures. MCH CYSHCN programs in every state, territory, and the District of Columbia recognize these measures and report annually on strategies for implementation. Similarly, since the launch of Healthy People 2000, a goal within the CYSHCN advocacy community has been to increase the number of objectives that focus specifically on the health of and services for CYSHCN and their families. With each successive Healthy People publication, the federal government has increasingly called for comprehensive systems of services for CYSHCN. Indeed, MCHB’s basic mission is revealed in one recurring Healthy People objective (MICH-31): To increase the proportion of children with special healthcare needs who receive their care in family-centered, comprehensive, coordinated systems.
In 2001, the first National Survey of Children with Special Health Care Needs (NS-CSHCN) was conducted to establish prevalence estimates and assess and monitor the health status of CYSHCN. Data has been collected three times over the past decade (2001, 2005-6, and 2009-10). This survey complements the National Survey of Children’s Health (NSCH), allowing comparison between the status of children overall in the country and the status of children and families with special healthcare needs.
Progress certainly has been made. Throughout much of the last century, it was commonplace for children and youth with special healthcare needs to be institutionalized or to not survive2. Now, increased survival rates and effective interventions that address developmental and education needs can lead to satisfying, productive lives. However, there is still ample room for improvement. In 2009-10, the NS-CSHCN indicated that only 17.6% of CYSHCN received services in a high-quality system where all age-relevant outcomes were achieved15.
Each subsequent Healthy People publication is a step in the right direction, acknowledging successes to date and setting the bar for future improvement. Over the next three chapters, we will examine Healthy People objectives in the context of the six core performance measures promoted by MCHB; discuss the relevance of these objectives to at-risk populations; and forecast how the performance measures and objectives will extend into adulthood for transitioning children and youth with special healthcare needs
At five months of age, a brain infection sent Katie Beckett to St. Luke’s Methodist Hospital in Cedar Rapid, Iowa, where she stayed for most of the next three years. While Katie needed to use a ventilator to breathe for much of the day, she didn’t need the level of care and expense that a continued hospital stay cost. When private insurance ran out, Katie’s parents turned to Medicaid. Her mother, Julie, successfully advocated for a waiver of the rules that required children with special healthcare needs to be in the hospital in order to receive needed Medicaid funding. Keeping Katie in the hospital meant the government was paying $10,000 to $12,000 a month—five times what in-home care would cost. Thanks to an historic decision in 1981 by then President Ronald Reagan, Katie went home.
Over the next 30 years, Katie’s mother, Julie, helped co-found Family Voices and create the first funding for Family-to-Family Health Information Centers. Katie became an advocate and board member of KASA, Kids As Self Advocates, a Family Voices project dedicated to empowering young people with special healthcare needs. Katie often spoke at conferences and testified before Congress.
The need for families to be actively involved in the care of technology-dependent children like Katie focused attention on the critical roles that families play in this process. Family/professional partnerships began to blossom. The Beckett’s efforts also ensured that a broad array of families representing every group in our country would join this movement.
All Genetic Alliance content, except where otherwise noted, is licensed under a Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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