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Next Steps: A Practitioner's Guide For Themed Follow-up Visits For Their Patients to Achieve a Healthy Weight
Next Steps: A Practitioner's Guide For Themed Follow-up
Visits For Their Patients to Achieve a Healthy Weight

Introduction to the Children and Youth with Special Healthcare Needs Toolkits

“Applying Quality Improvement methodology not just to one or two individual practices, but to the whole system of care, offers real hope for widespread change. I am convinced that it is only by working together— families, providers, administrators, and policymakers—that we will be able to develop the high quality care system that we all seek.”
– A p
articipant in one of the learning collaboratives

Improving the System of Care for CYSHCNs: Introduction

Children and Youth with Special Healthcare Needs (CYSHCNs) account for almost 1 in 5 children in the United States. Developing community-based systems of care that address their needs is a significant challenge for providers and families.

At the state level, responsibility for planning and developing these systems lies with Maternal and Child Health (MCH) and CSHCN programs, supported historically through Title V of the Social Security Act, along with state-matching funds.

Improving this system of care is a Healthy People 2020 goal, and a priority for the Maternal and Child Health Bureau.

In 2007, the Maternal and Child Health Bureau (MCHB) engaged the National Initiative for Children’s Healthcare Quality (NICHQ) to lead an initiative applying quality improvement principles to the system of care for CYSHCNs. The project worked in three phases 

  1. Identify successful existing strategies that enhance the system of care for CYSHCNs., and use them to form a framework for system improvement.
  2. Work with families, clinical teams and Title V to apply the framework for improvement to two “real-world” programs- services for children with Epilepsy, and Follow-Up after Newborn Hearing Screening.
  3. Evaluate the impact of the initiative, both on identifying, testing and spreading successful system change strategies, and on the integration of quality improvement activities in state Title V programs.

The project built on three previous HRSA-MCHB funded NICHQ learning collaboratives on the Medical Home, Newborn Hearing Screening and Follow-Up and Project Access-Epilepsy that provided a rich fund of promising change strategies to inform this work.

This QI initiative sought not just to improve healthcare quality in certain practices or hospitals, but across entire statewide systems, and to strengthen links not just within healthcare but also with education and intervention services. 


The Approach

Based on experience in previous collaboratives, NICHQ adopted three tightly linked frameworks to guide this initiative: The Care Model for Child Health, The Breakthrough Series, and The Model for Improvement.

The Care Model for Child Health
This conceptual model is consistent with the medical home approach to care that is accessible, family-centered, continuous, comprehensive, coordinated, compassionate and culturally competent. The care model comprises 6 interrelated system changes:

  • Effective team care
  • Planned interactions
  • Self-management support
  • Community outreach and engagement of community resources
  • Integrated decision support
  • Patient registries and other supportive information technology. 

The model emphasizes a “prepared pro-active” team approach to care, and an informed and activated family functioning in partnership with the care providers, testing specific changes to delivery system design.

Breakthrough Series Learning Collaborative
The Breakthrough Series Model, pioneered by the Institute for Healthcare Improvement, provides a structured sequence of activities that was used to engage quality improvement experts, NICHQ faculty, Title V leaders, clinical teams, and families in testing and implementing changes to improve the system of care for CYSHCNs.

The sequence of activities in a learning collaborative includes:

  • Planning
  • Pre-Work
  • Learning Sessions
  • Action Periods
  • Collaborative Team Calls
  • Planning for Spread

The Model for Improvement
The Model for Improvement was developed by Associates in Process Improvement (link here to Model for Improvement on NICHQ site)The model identified 4 key elements of process improvement:

  • Set Specific and Measurable Aims
  • Track Measures of Improvement over time
  • Identify key changes that result in desired improvements
  • Test key changes in a series of “Plan-Do-Study-Act” or “PDSA” cycles during which teams learn how to apply key changes in their own organizations 

Aims, Changes and Measures

Setting Aims
In addition to the overarching aim of achieving breakthrough improvements in the system of care for CYSHCNs, each participating state team crafted its own aim statement that reflected state priorities and included measureable goals.

The Driver Diagram: Key processes that can drive system improvement
NICHQ, in collaboration with content experts created pictorial representations of desired outcomes and the key system components (drivers) needed to achieve them. As the project progressed, the driver diagram was adjusted to achieve better alignment with MCHB core outcomes.

Creating a Change Package
For each secondary driver, NICHQ identified key processes of care contributing to that driver, and created a “change package” and of promising strategies that could be trailed by clinical teams in an effort to enhance those processes.

Newborn Hearing Screening

  • An important first step to achieving a medical home model of care is the correct identification of the child’s PCP prior to discharge from the birth hospital.
  • An error in documentation of the PCP could result in the correct PCP failing to receive a copy of the screening result, and contribute to delays in follow-up.
  • Change Strategy 1- Teams could trial collecting this information when families registered for the birth admission, or
  • Change Strategy 2- Have the screener check with the family that the correct PCP was documented. 


  • Joint development of a written care plan between the specialist, PCP and family is a key process in ensuring that parents are actively involved in care.
  • Clinical teams were encouraged to trial different models of care plan creation.
  • Change Strategy 1: Parents and PCP set aside time to create the plan during a clinic visit.
  • Change Strategy 2: Create an electronic template of the plan that parents and providers can all contribute to. 

Title V

  • Title V leadership sought to support QI Efforts at the clinical interface.
  • For each Change Strategy suggested for clinical teams, we created an aligned strategy that could be trialed by state leaders.
  • Change Strategy 1: State Title V leadership could promote the concept of prenatal identification of child’s PCP with prenatal provider agencies and professional organizations.
  • Change Strategy 2: State Title V leadership could create templates of quality care plans and make them available via web-based resource for providers and families to customize. 

Measurement is key to the success of any quality improvement initiative. Measures are needed to determine whether a change has been an improvement. For both newborn hearing screening and epilepsy components of the project we created a series of customized process measures that state teams could track monthly, via reporting to a web-based data repository or Extranet.

Each measure had a well- defined numerator and denominator. Examples include

Newborn Hearing Screening

Proportion of newborns:

  • Screened by 1 month of age
  • With hearing screen result available in chart at time of first PCP visit
  • With verified PCP
  • With 2nd contact number documented

Proportion of newborns that referred on screening:

  • With completed audiologic evaluation by age 3 months
  • With PCP/MH notified of diagnostic test result
  • Given a care plan/ roadmap
  • With language preference documented
  • With race/ethnicity documented
  • Unable to find by age 3 months
  • Unable to find at 1 year
  • With no documented second screen

Proportion of infants with proven hearing loss:

  • Offered amplification by age 3 months
  • Offered intervention by age 6 months
  • Completed IFSP by age 6 months
  • Offered referral to parent to parent group

Additional process measures:

  • Time to Third Available New Audiology Appointment
  • Median age at completion of audiologic evaluation for screen refers
  • Median age offered intervention for infants with proven hearing loss


Proportion of children with epilepsy:

  • With home medication list/card
  • Screened for medication side effects
  • Family understands medication side effects
  • With a care/management plan
  • With a seizure action plan
  • Screened for learning/behavioral and mental health problems.
  • With timely labs and test results
  • With a medical home
  • With a transition plan to adult care
  • With language preference documented
  • With race/ethnicity documented
  • Visited ER since last office visit

Additional process measures:

  • Time To Third Available New Appointment with Neurologist.
  • Proportion of patients with epilepsy entered into the epilepsy registry
  • Proportion of patients entered into epilepsy registry with all key components complete.
  • Proportion of visits to neurology specialist with referral letter from PCP available.
  • Proportion of families of children with epilepsy offered support services.

State Teams

Learning Collaborative A

Eleven states, with a total of 14 teams participated in Learning Collaborative A between February and March 2009. During the Pre-work period (February-April 2008) each team:

  • collected baseline data
  • prepared a “storyboard” about the system of care in their state
  • crafted an aim statement
  • conducted a “walk-through” exercise designed to help participants view their system from the perspective of a parent/family. 

Teams traveled to three in-person Learning Sessions, separated by Action Periods in which they applied quality improvement techniques to making “small tests of change” to their care delivery systems.

Teams participated in coaching calls in which they shared experiences and lessons learned.

Throughout the action periods, teams returned data monthly on project measures, and on descriptions of their PDSAs to the Extranet. NICHQ staff rated teams on their progress.

Learning Collaborative B

Between March 2009 and September 2010, the eight Epilepsy state teams from Learning Collaborative A continued their work, while eight new states participated in Newborn Hearing Screening Quality Improvement work (see Table). Learning Collaborative B followed the same format as Learning Collaborative A, with 3 face to face learning sessions interspersed with 3 action periods.

The following table shows the location of the ISC Participating Teams:


Newborn Hearing Screening (A) Newborn Hearing Screening (B)
California (Northern) Colorado Hawaii
Florida Utah Illinois
Maine Massachusetts Indiana 
Nevada Nevada  Iowa 
New Hampshire Minnesota  Maine 
New York New York New Hampshire
Washington Washington North Carolina 


Project Highlights

NICHQ wishes to acknowledge the tremendous depth and breadth of work that was undertaken by each of the state improvement teams. Here we present just a few highlights of that work. We hope this will give you some ideas for changes that could be trialed in your own system.

Family and Youth Involvement
In addition to family involvement as co-chairs and as representatives on all state teams, we heard from young people themselves who were living with special healthcare needs, and finding ways to work with the healthcare system. These young people lead busy lives, and couldn’t be at the learning sessions, but they texted their answers to questions during an interactive presentation for collaborative attendees.

Idea: Try use of new technologies such as texting to engage families and YSHCNs in QI work.

Chart Reviews
Small-scale chart reviews are a quick way to determine whether the process for documenting results is functioning. The Colorado team reviewed 10 sharts at each of 3 PCP practices. One PCP had all newborn hearing screen results, but the other two had none. This result was surprising. It revealed that in some cases in-patient and out-patient Electronic health Records (EHRs) “did not communicate”

Idea: Brief (5-10 cases) chart review should reveal whether a documentation system is actually working as intended.

Special Populations
Some children (e.g., children in minority families, children that have had extended stays in the NICU, children in foster care) may be at particular risk of being lost to follow-up after newborn hearing screening. Utah worked with the state foster care system and found that matching of children with hearing screen results was possible in less than 50% cases due in part to incomplete identifying information entered into electronic datasets. The team then worked to correct the deficits.

Track process measures (screen by 1 month, diagnosis by 3 months, intervention by 6 months) for special populations and determine if there are differences with the general population of babies.

Identify barriers that may prevent high quality tracking and follow-up e.g. inadequate or incorrect identifying information.

Work with families and advocacy groups to find ways to correct these deficits.

Data Tracking
While state NHS programs are working towards electronic data tracking systems, few states have the ability to track cases in real-time. NICHQ worked with teams to create “data tracking spreadsheets” that could be used at the state level to track cases that had referred on screening through the diagnostic and intervention processes. Use of the tracking spreadsheet, together with ensuring the PCP was named correctly, that the PCP was informed by phone when the baby “referred” on screening, and that audiology results were faxed to the PCP resulted in a reduction in loss-to-follow-up at three months from 20% to close to 0%.

Idea: Data tracking of infants that “refer” after newborn hearing screening, together with implementation of system improvements can be an effective way to reduce loss-to-follow-up at least in the short term.

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