Assessment to Action: Introduction
The Measuring and Monitoring (M&M) Project
Funded by the Maternal and Child Health Bureau's Division of Services for Children with Special Health Needs (DSCSHN) (1998-2003), Measuring and Monitoring (M&M) Community-Based Systems of Care for Children and youth with special health care needs (CSHCN) is a collaborative endeavor between EIRI and USU and participating states to achieve the outcomes outlined in Healthy People 2010. These goals are measured by a process of repeated measurements to understand how services can be improved, referred to as "Continuous Quality Improvement" (CQI). CQI is instrumental in informing state CSHCN leaders about how well their services, policies, and practices are working for children and families.
To this end, all states are asked to create a comprehensive system of care for children and youth with special health care needs and their families as outlined in the federal 10-year action plan, Healthy People 2010. This plan is the culmination of several parallel activities sponsored by the Division of Services for Children with Special Health Needs (DSCSHN) of the Maternal and Child Health Bureau (MCHB) and represents a partnership among public, private, and family sectors at the federal, state, and local levels. This system requires that the following six core CSHCN outcomes be achieved.
- Families of children with special health care needs will partner in decision-making at all levels and will be satisfied with the services they receive.
- Children with special health care needs will receive coordinated, ongoing, comprehensive care within a medical home.
- Families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.
- Children will be screened early and continuously for special health care needs.
- Community-based service systems will be organized so families can use them easily.
- Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
The Purpose of the M&M Project Website
The purpose of this website is to disseminate the M&M process and highlight measurement strategies used in M&M partner states, allowing all states to benefit from the CQI process.
Who Are Children with Special Health Care Needs?
The definition of children with special health care needs, developed by MCHB, is:
Children with special health care needs are those 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.
This definition encompasses children and youth who not only require health-related services, but who may also have other needs, including early intervention services, special and vocational educational services, mental health and substance abuse services, and social services. Moreover, their families may require support and other services, such as transportation, respite care, and employment.
The first National Survey of Children with Special Health Care Needs (CSHCN), supported by HRSA and undertaken by the Center for Disease Control and Prevention's National Center for Health Statistics, estimates that approximately 10-16% of all children in this country meet this definition, excluding the at-risk population.
Why Is a System of Care Important for CSHCN?
A fundamental goal for serving children with special health care needs is to create an accessible, community-based system of care. In fact, the overall purpose of state CSHCN programs is to ensure that children are served in family-centered, community-based service systems. The six core outcomes for children and families represent essential components of this system of care, and attainment of these core measures requires that key stakeholders join forces to ensure coordinated, comprehensive care. Partnerships among these groups also play a valuable role in increasing state capacity to measure and monitor outcome achievements.
Two objectives from the Healthy People 2010 Plan publications served as the impetus for the M&M Project.
- 16.22 Increase the proportion of children with special health care needs who have access to a medical home.
- 16.23 Increase the proportion of Territories and States that have service systems for children with special health care needs.
The M&M Project embraces the goals of Healthy People 2010 as an unparalleled opportunity to move beyond development and demonstration to full implementation of a system of care for all children with special health care needs and their families. Through active collaboration among Family Voices, the March of Dimes, the American Academy of Pediatrics, and numerous other organizations and individuals, HRSA's Maternal and Child Health Bureau has created a 10-Year Action Plan that offers concrete, practical steps toward accomplishing the Healthy People 2010 objective of community-based systems of services for all children with special health care needs in all States.
Why Is Monitoring these Six Outcomes Important?
State Title V programs are responsible for working with community, state, and federal partners to measure and monitor progress in achieving CSHCN core measures. The collection of data on each core measure is necessary for several purposes: (a) identifying the children with special needs, (b) reporting outcome results, and (c) guiding state efforts to ensure a comprehensive coordinated system of care. Measurement enables states to make evidence-driven decisions on where to focus efforts as well as how to set short term and long term objectives to reach the six core outcomes. Evidence-based decision-making allows states to make smart choices in allocating funds by monitoring the extent to which activities achieve the desired results.
Monitoring progress on the six outcomes through a valid and reliable process helps to keep the vision of a community-based system of care on track, and provide important information on what is working and what requires further attention.
What Are the M&M Indicators?
Recognizing that the Six Core CSHCN Outcomes represent various components, the M&M Project developed indicators to guide the measurement of state achievement. A list of these indicators follows.
Outcome #1: Families of children with special health care needs will partner in decision-making at all levels and will be satisfied with the services they receive.
1.1 % of families of CSHCN reporting satisfaction with the quality of regular source of primary care, getting referrals and appointments for needed services, and coordination between primary and specialty care overall services.
1.2 % of parents of CSHCN who report satisfaction with their level of involvement/input in setting concerns and priorities to make decisions about their child's care plan.
1.3 % of parents of CSHCN who report knowing what to do when they are not satisfied with the services their child/family receives.
1.4 % of parents of CSHCN who are supported financially for their involvement in state and local activities, including transportation, provision of stipends, employment of families, and child care.
1.5 % of parents of CSHCN who report that they are effective partners in policymaking at the state and local levels.
Outcome #2: Children with special health care needs will receive coordinated, ongoing, comprehensive care within a medical home.
2.1 % of CSHCN with a regular source of primary medical care through a primary care provider.
2.2 % of CSHCN whose regular source of care communicates in a way that is clear and understandable to the family.
2.3 % of parents whose regular source of primary medical care identifies, discusses, and addresses the comprehensive needs of their child and family.
2.4 % of CSHCN whose regular source of primary medical care ensures age-appropriate well-child checks, including: vision, hearing, developmental, behavioral/mental health, oral health, newborn screening, immunizations.
2.5 % of parents of CSHCN who receive referrals and assistance from their regular source of primary medical care in accessing needed/desired services.
Outcome #3: Families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.
3.1 % of CSHCN with insurance that covers costs of needed services, including: mental health, dental care, age-appropriate well-child checks, durable medical equipment, ancillary services, non-durable medical supplies, care coordination, prescriptions, specialty care, related therapies (e.g., PT, OT, speech/language, audiology), in-home nursing.
3.2 Amount of out-of-pocket costs paid by families of CSHCN, including costs of: mental health, dental care, age-appropriate well-child checks, durable medical equipment, ancillary services, non-durable medical supplies, respite care, transportation, care coordination, prescriptions, specialty care, related therapies (e.g., PT, OT, speech/language, audiology), in-home nursing, home modifications, car/van modifications.
3.3 % of CSHCN who can choose providers of their choice.
3.4 % of CSHCN whose insurance provides timely approval for needed care, clear information to parents and providers about coverage, resources, and complaint procedures, and overall parent satisfaction.
Outcome #4: Children will be screened early and continuously for special health care needs.
4.1 % of infants whose mothers began prenatal screening in the first trimester of pregnancy for: Smoking, Alcohol, Drugs, Tests for birth defects, HIV, Physical abuse.
4.2 % of at-risk infants and children being tracked for special health care needs and developmental delays.
4.3 % of children receiving age-appropriate well-child checks including: vision, hearing, developmental, behavioral, mental health, oral health, metabolic, EPSDT (if implemented in state).
4.4 % of children receiving needed follow-up due to failed screening or risk factors: vision, hearing, developmental, behavioral, mental health, oral health, metabolic.
Outcome #5: Community-based service systems will be organized so families can use them easily.
5.1 % of parents of CSHCN who have a single coordinated service plan that involves all providers and a lead service coordinator who communicates with the family.
5.2 % of parents of CSHCN who report that they are able to access comprehensive services for their child and family.
5.3 % of parents of CSHCN who have specialty care available in their region of the state.
5.4 The degree to which the state service system has an enrollment/eligibility process that links families of CSHCN (and their medical home) with a wide variety of public and private services and resources.
5.5 Number of private/public partnerships to provide community-based, comprehensive medical services for CSHCN (e.g., data sharing, contracts, MOAs).
Outcome #6: Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
6.1 % of youth with SHCN who by age 14 have a transition plan that addresses employment, transportation, housing, independent living, physical and mental health, and necessary accommodations; and % of youth with SHCN who by age 16 have a transition plan that includes appropriate agencies as part of the transition planning team.
6.2 % of youth with SHCN whose regular source of primary medical care facilitates the transition from pediatric to adult providers.
6.3 % of adult health care providers who are prepared to serve youth with SHCN.
6.4 % of youth who report satisfaction with the information and training they received to make informed decisions about their health care and other services.
6.5 % of youth with SHCN who received necessary services/supports by age 21: Health insurance, post-secondary education, Employment, Health Insurance, Transportation, Housing, Personal care attendant, SSI, SSA-related work incentives (e.g., PASS, 1619 a & b).
What Was the Process Used to Develop Indicators?
Teams comprised of parents, administrators, service providers, DSCSHN staff, data personnel from each participating state were formed to develop the indicators. These teams met with M&M staff several times to craft a series of indicators that represented both their state's current capacity to collect data as well as their new strategies to achieve the six core outcomes for children and their families by 2010. An extensive consensus-building process involved representatives from all six states and narrowed the list to 4-5 indicators per outcome.
The steps that led to the final indicators are as follows:
- Initial list of approximately 10 indicators identified from Literature Review and recommendations from experts in field.
- Ratings of top 5 indicators obtained from 15-20 team members in each of 6 states.
- Ratings of top 5 indicators obtained via group consensus per state.
- Ratings of top 4-5 indicators obtained via consensus across all 6 states.
- DSCSHN confirmation to the selected indicators.
What Is the M&M "Assessment to Action" Process?
The M&M project developed the following 4-step Assessment to Action Process to assist states in applying evidence-based decision making. An overview is presented below.
| Steps | Tasks |
|---|---|
| Step 1: Get Organized |
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| Step 2: Identify Existing Data and Obtain Data Results |
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| Step 3: Share Results |
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| Step 4: Develop an Action Plan to Improve the Service System & Measure Capabilities |
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These steps are described in detail throughout the remainder of this guide.
