Step 2: Identify Existing Data and Obtain Data Results
Activity 3: Develop Procedures to Obtain Data Results Based on the Identified Data Sources
Subsequent Data Subcommittee meetings are intended to review actual results from specified/identified data sources for measuring the M&M indicators.
Agenda
A sample agenda for a Data Subcommittee meeting to review data resources is available to download as a Word Document (10K) and is provided below for review.
Sample Agenda for Data Subcommittee Meeting to Review Data ResourcesStep 2: Identify Existing Data and Obtain Data ResultsDate: Time: Location: Attendees: Meeting Purpose:
Agenda:
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The breadth of the data sources identified depends on the "buy-in" from needed partners and their willingness to share. Once existing data sources are identified, useful data must be gathered from those sources. State Leadership Teams may encounter some challenges to their data collection efforts, but they should remain focused on working with agencies to accomplish their goals.
Data Matrix
A Data Matrix for states to use in completing Step 2 for each of the six outcomes is available to download as a Word Document (10K)
States should find that they identify new data sources through this process.
Lessons Learned from M&M Partner States Regarding Data Availability
Over the 5 years of the M&M Project, it was evident that some indicators are easier to measure than others. Data Subcommittees from all the M&M states obtained actual data results from a wide array of sources both within and outside of the CSHCN program. Most of the data results were survey data from sources such as CSHCN client surveys, randomized household health surveys, CAHPS, Family Voices "Your Voice Counts," etc. Data related to transition came from the Department of Education and Medical Home project surveys. Data results are now available from the National Survey on CSHCN as well.
Indicators Typically Measured
The 16 of the 28 indicators that states were typically able to measure via interagency data coordination are listed below.
Outcome #1: Families partner and are satisfied
1.1: % families reporting satisfaction with the quality of primary care, obtaining referrals, needed services, coordination among providers.
1.2: % of parents who report satisfaction with their level of involvement in setting concerns/priorities about their child's care.
Outcome #2: Medical home
2.1: % with a regular source of primary medical care through a primary care provider.
2.2: % whose regular source of primary medical 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.
2.5: % of parents who receive referrals and assistance from the regular source of primary medical care in accessing needed services.
Outcome #3: Adequate insurance
3.1: % with insurance to cover the costs of needed services.
3.2: Amount of out-of-pocket costs paid by families.
3.3: % who can choose providers of their choice.
3.4: % whose insurance provides timely approval for needed care, overall parent satisfaction, clear information about coverage, resources, and complaint procedures.
Outcome #4: Screening
4.1: % of infants whose mothers began prenatal screening in the first trimester of pregnancy.
4.2: % of infants and families being monitored for special health care needs and developmental delays.
Outcome #5: Services are organized
5.2: % of parents who report that they are able to access comprehensive services for their child and family.
5.3: % of parents who have specialty care available in their region of the state.
Outcome #6: Transition to adulthood
6.1: % of youth who have a transition plan by age 14 (typically available for children in Special Ed. only).
6.2: % of youth whose regular source of primary medical care facilitates the transition from pediatric to adult providers.
Indicators with Greater Challenge
In general, states were less prepared to supply data for the12 additional indicators listed below. (1) These tended to be indicators based on multiple data sources (i.e., metabolic screening, newborn hearing screening, Early Intervention developmental screening, EPSDT); or (2) they reflected the presence of greater levels of interagency collaboration within the current system, particularly at local levels (i.e., participation at state and local levels; interagency enrollment/eligibility process).
Outcome #1: Families partner and are satisfied
1.3: % of parents who know steps to take when they are not satisfied with services.
1.4: % of parents who are supported financially for their involvement in state and local activities.
1.5: % of parents who report that they are effective partners in policymaking at state and local levels.
Outcome #2: Medical home
2.4: % whose regular source of primary medical care ensures age-appropriate well-child checks, including vision, hearing, developmental, oral health, behavioral/mental health, newborn screening, immunizations.
Outcome #4: Screening
4.3: % of children receiving age-appropriate well-child checks, including vision, hearing, developmental, oral health, behavioral/mental health, metabolic, and EPSDT.
4.4: % of children receiving needed follow-up due to failed screening (most states are able to monitor follow up of newborn hearing screening).
Outcome #5: Services are organized
5.1: % of parents who have a coordinated service plan that involves all providers and a lead service coordinator who communicates with the family.
5.4: The degree to which the state service system has an enrollment/eligibility process that links families and their medical home with a wide variety of public and private services and resources.
5.5: The number of private/public partnerships to provide community-based, comprehensive medical services for CSHCN (data sharing, contracts, MOAs).
Outcome #6: Transition to adulthood
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 who received desired services and supports by age 21, including post-secondary education, employment, health insurance, transportation, housing, personal care attendant, SSI, SSA-related work incentives (e.g., PASS, 1619 a & b).
Monitoring the Broader CSHCN Population
States continue to be challenged in the ability to monitor progress on using the broad definition of CSHCN: "those children who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required to children generally." Issues affecting state capacity to monitor and measure the progress for this broad CSHCN population are listed below.
- Household samples of samples of CSHCN provide the most accurate approximation of the children who fit the broad definition of CSHCN. Some states have collected data on a randomized sample of children fitting this definition based on state-designed health surveys. The National Survey of CSHCN provides a common denominator for across-state comparisons, although it will not provide information on every child with a special health need.
- Some states are able to monitor progress for the broadly defined CSHCN population served by Medicaid, but not necessarily for those with private insurance or on SCHIP.
- The relatively small sample size from some of these surveys makes it difficult t determine the needs of particular populations, such as children with asthma, cerebral palsy, Down syndrome, etc.
- CSHCN from diverse cultures tend to be underrepresented, making it difficult to apply survey data in judging the needs of all children.
- Some states are able to report on children served through their CSHCN clinics only.
- Some data sources were available one time only (i.e., Family Voices "Your Voice Counts" survey, or Utah's Child Health Survey).
This variability in samples makes it more challenging to compare data results across states. Many states are relying on the National Survey of CSHCN to provide the common metric for reporting and to conduct state-by-state comparisons. However, data on smaller populations can provide useful information to guide State's program improvement efforts. Therefore, M&M staff encouraged states to consider all their available data to complement the information to be obtained from the National Survey of CSHCN.