Step 1: Get Organized

Key Activities

Determine state's CSHCN program capacity to commit staff time to support this endeavor.
Recruit "champions" (i.e., administrators, direct service providers, consumer and family advocates, data analysts, and other key stakeholders).
Ensure support and interest in achieving the Healthy People 2010 Objective and six CSHCN core measures.
Review state priorities and how they correspond to the CSHCN performance measures.

Activity 1: Determine State's CSHCN Program Capacity to Commit Staff Time to Support This Endeavor.

The first Guideline requires a meeting of CSHCN leaders to review their capacity to implement the Assessment to Action Process. Team leaders should plan on scheduling monthly meetings to implement this process. Data analysts who are familiar with the measurement tools and data bases will be needed to participate in the first three steps.

Activity 2: Recruit "champions" (i.e., Administrators, Direct Service Providers, Consumer and Family Advocates, Data Analysts, and Other Key Stakeholders).

Guideline 2 involves forming a State Leadership Team comprised of stakeholders from the broader system of care. In addition to key stakeholders and project "champions," the state interagency team should bring together missing representatives who have previously had little direct communication with the state's CSHCN program.

State Leadership Teams consist of the following essential groups of participants:

Consumers (parents, youth with special health care needs)
- Parents from various cultural groups
- Representatives from structured parent organizations, e.g., Family Voices
- Youth with SHCN
State-level agency representation (directors)
- Medicaid
- Education
- Vocational Rehabilitation
- MCH/Public Health
- University Centers of Excellence in Disabilities
- Organized advocacy groups such as Family Voices
Community-level providers (physicians, public health nurses, etc.)

Involvement of families from diverse cultures is critical. Advantages of family involvement include (a) assurance that the data-driven, decision-making system reflects family priorities; (b) assurance that measurement tools are meaningful to families; (c) assistance in interpreting data; and (d) advocacy for long-term use of data findings to improve the system of care for youth with special health care needs are equally important, particularly in addressing measure #6: transition to adult life.

Activity 3: Ensure Support and Interest in Achieving the Healthy People 2010 Objectives and 6 CSHCN Core Outcomes.

Establish the Vision

The Assessment to Action Process is designed to help establish a shared vision in each state by facilitating a review of its state priorities identified in the Title V Block grants, needs assessments, and other state plans. This shared vision helps to ensure that states view M&M as a support for integrating their existing vision rather than as a separate or parallel effort. The Assessment to Action Model strives to ensure "buy-in" from state agencies that are unsure about their role in achieving the six CSHCN measures. The State Leadership Team establishes a collective vision to achieve a comprehensive system of care for CSHCN as defined by the Maternal and Child Health Bureau (MCHB).

Activity 4: Review State Priorities and How They Correspond to the CSHCN Core Outcomes.

Prioritize Core Outcomes

The last guideline of Step 1 involves prioritizing core measures. During the first meeting, the State Leadership Team reviews their state's priorities identified in state plans and needs assessments to determine how they correspond to the CSHCN performance measures.

Teams must be clear about their goals in implementing the Assessment to Action Process. For example, an organization may decide to collect data to (a) guide program planning and improve services, or (b) increase consumer and partner awareness of CSHCN issues and importance of collaboration.

Prioritizing core outcomes allows the State Leadership Team to adhere to a focused work plan and not get drawn off task. The state Title V Block Grant can be used to help identify state priorities. For example, some states developed state performance measures in their Block Grant that emphasized critical components of the core measures.

A sample agenda for an initial meeting to implement Step 1 is available to download as a Word Document (10K) and is provided below for review.

Sample Agenda for Initial Meeting
Measuring and Monitoring Outcomes for Children with Special Health Care Needs (CSHCN) Sample Agenda for Initial Meeting Step 1: Get Organized Date: Time: Location: Attendees: Meeting purpose: Identify goals/objectives related to the national core outcomes for CSHCN Begin a planning discussion on how to measure and monitor progress toward achieving these outcomes Agenda Welcome and Introductions Overview of the M&M Project Project description/experience What is Continuous Quality Improvement (CQI)? Overview of Healthy People 2010 Core Measures for CSHCN Discussion: How do state's goals and objectives relate to these outcomes? Prioritize: Which common goals and objectives are most important? M&M Process from Assessment to Action State Leadership Team Data Subcommittee Timeframe Group Discussion: Available data sources related to the outcomes for CSHCN CSHCN data sources Other state data sources National data sources Next steps Formalize a Data Subcommittee to review current data Schedule next meeting

Step 1 Checklist: Get Organized

The Step 1 checklist is available to download as a Word Document (10K) and is provided below for review.

Initial Steps

Organize an internal group of CSHCN leaders to decide whether they want to proceed with the gathering of quality information for the CSHCN program
Introduce core measure indicators and learn about the State Leadership Team Assessment to Action approach.

Identify Essential Groups of Participants

Consumers (Parents, youth with special health care needs)
State-level agency representation (Directors)
- Medicaid
- Education
- Vocational Rehabilitation
- MCH/Public Health
- University Centers of Excellence in Disabilities
Community-level providers (physicians, public health nurses)

Conduct a State Leadership Team Meeting

Establish the vision
Review state's priorities and compare to CSHCN performance measures
Select/Prioritize core measures