Opportunity to Strengthen Your System of Care for CYSHCN: Action Learning Collaborative


AMCHP, in partnership with the National Academy for State Health Policy (NASHP) and with support from the Lucile Packard Foundation for Children’s Health, is excited to announce a Request for Applications for state teams interested in receiving peer-to-peer technical assistance in adopting the National Standards for Systems of Care for Children and Youth with Special Health Care Needs (the Standards) to improve their state system of care for this population of children.

This is an eight-month TA opportunity for five selected states beginning in February 2017 with a kickoff webinar and consisting of a face-to-face meeting in spring 2017 in Washington, D.C. and ongoing technical assistance calls through the remaining months. For questions about this RFA, contact Kate Taft at ktaft@amchp.org. To download a blank application form, click here. Applications must be submitted electronically by Jan. 23, 2017 to Cori Floyd at cfloyd@amchp.org.


In the United States, about 11.2 million children have special health care needs.CYSHCN Fact Sheet.PNG Children and youth with special health care needs (CYSHCN) are a diverse group of children, ranging from children with chronic conditions to those with more medically complex health issues, to children with behavioral or emotional conditions. The Maternal and Child Health Bureau defines CYSHCN as children from birth to age 21 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.

As a national advocate for family health, AMCHP ensures these children receive high quality, family-centered, integrated health services by partnering with national and state agencies and organizations, such as state Title V CYSHCN Programs.

State Title V CYSHCN programs have decades of experience in creating and sustaining systems of care for CYSHCN and their families. State CYSHCN programs ensure family-centered, community-based, coordinated care for children with chronic conditions and disabilities.

With support from several sponsors, including the Maternal and Child Health Bureau (MCHB) and the Lucile Packard Foundation for Children’s Health, AMCHP assists families and state Title V CYSHCN programs with the following:

  • Policy and legislative analysis
  • Research
  • Coordination of national meetings
  • Publications

To access a fact sheet on general CYSHCN informationclick here.

To access an overview of Models of Care for CYSHCNclick here.

To learn about Health Reform related to CYSHCNclick here.

Focus Areas

The CYSHCN program at AMCHP covers a range of focus areas through our partnerships with state and national organizations.

To learn more about each focus area, click on the subjects below or click here.

The Landscape of Medical Care for Children with Medical Complexity (Association Special Report)

June 2013

This special report looks at a growing sub-population among children — the medically complex — and reveals the extent and cost of their health services utilization. It also examines where there are gaps in how the care is managed, and identifies opportunities for improvement. This report is supported by the Children’s Hospital Association.

Source: National Association of Children’s Hospitals and Related Institutions (NACHRI) and National Association of Children’s Hospitals (NACH)

Available at: http://www.childrenshospitals.net/AM/Template.cfm?Section=Home3&TEMPLATE=/CM/ContentDisplay.cfm&CONTENTID=66925

The State of the World’s Children 2013 – Children with Disabilities

See the child – before the disability, urges new report

Children with disabilities and their communities both benefit if society focuses on what those children can achieve, rather than what they canno

Source: UNICEF

Available at: http://www.unicef.org/sowc2013/

Mike Spohr: On the Wings of a Nightingale


Today I ran into a Mexican restaurant to grab a quick lunch, and as I ate my meal I came across a table of nurses wearing hospital scrubs. As they chatted amongst themselves I thought about the many nurses my family has interacted with over the last five years, and I found myself filled with such appreciation for what these amazing women and men do for us.It was in the Neonatal Intensive Care Unit that I initially saw how amazing nurses can be. My first child, Maddie, had been born almost 12 weeks premature, and the hospital staff, upon determining that Maddies lungs were immature, rushed her to the NICU. There Maddies life hung in the balance, and though my wife, Heather, and I longed to care for her ourselves, her condition made it so that we couldnt. We had to trust the NICU nurses to take care of our baby for us, and that was incredibly hard — especially at night when we went home to catch a few hours sleep.

Source: Huffington Post

Available at: http://www.huffingtonpost.com/mike-spohr/nicu-nurses-on-the-wings-of-a-nightingale_b_3353060.html

National Profile of Children with Special Health Care Needs and Autism Spectrum Disorders: Key Findings from the 2009/10 NS-CSHCN & 2007 NSCH


According to the Centers for Disease Control and Prevention (CDC), “Autism Spectrum Disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. … ASDs are ‘spectrum disorders.’ That means ASDs affect each person in different ways, and can range from very mild to severe.”1 Consequently, nearly all children with ASD qualify as children with special health care needs (CSHCN), because they experience at least one type of ongoing condition that results in an above routine need for health and related services.2 The CSHCN Screener, which operationalizes this definition, was used in both the 2007 National Survey of Children’s Health (NSCH) and 2009/10 National Survey of Children with Special Health Care Needs (NS‐CSHCN) to identify CSHCN. Based on findings from the 2007 NSCH and 2009/10 NS‐CSHCN, 4.8% to 7.9% of U.S. CSHCN age 2‐17 years had current ASD*. Among CSHCN age 2‐17 years, prevalence of ASD ranges across states from 4.5% in Mississippi to 14.3% in New Jersey according to data from the 2009/10 NS‐CSHCN.

Source: Data Resource Center for Child and Adolescent Health

Available at: http://childhealthdata.org/docs/drc/asd-data-brief_4.2.12.pdf

Early bouts with cancer linked to developmental delays


Infants and toddlers who have been treated for cancer tend to reach certain developmental milestones later than their healthy peers, according to a study.

The findings by researchers with the National Institutes of Health and in Italy show delays may occur early in the course of treatment and suggest that young children with cancer might benefit from early interventions such as physical or language therapy.

Compared to children who had not had cancer, children treated for cancer before age 4 progressed more slowly in vocabulary, cognitive functions such as attention and memory, and motor skills. However, having cancer did not appear to affect children’s social and emotional development. Their ability to respond to their parents, for example, was comparable to that of their peers who did not have cancer. Also unaffected by cancer was the ability to engage in make-believe play, such as pretending to pour and serve tea, which typically develops between 12 and 18 months of age.

Source: National Nursing News

Available at: http://news.nurse.com/article/20120311/NATIONAL02/103120041