MCH Needs Assessment and its Uses in Program Planning: Promising Approaches and Challenges

September 2004

Table of Contents (for on-line viewing only) Printer friendly version (Adobe/.pdf)

Chapter I Introduction and Overview

The Title V Needs Assessment, a requirement of the Maternal and Child Health (MCH) Block Grant application, is a critical element of the MCH program planning process. State Title V agencies are required to conduct needs assessments every 5 years and to use the findings of the assessment to identify priorities and to guide resource allocation and program planning.

Despite this long-standing requirement, States have varied widely in the rigor, comprehensiveness, and usefulness of their needs assessments. To gain a better understanding of this variation and to identify promising approaches among the States, the Maternal and Child Health Bureau (MCHB) conducted an analysis and evaluation of the States' Title V needs assessment processes. This analysis includes several components:

• A review and abstraction of selected States' 2000 needs assessments;
• A review and abstraction of these States' Block Grant applications and annual reports, to assess the services currently provided by Title V programs;
• A comparison of the needs assessment findings and priorities to the services provided; and
• The development and testing of needs assessment methodologies for Title V programs.

This report presents the findings of these analyses. It is based on a three-step exploration of the process and outcomes of needs assessments in 15 study States. First, the States' 2000 needs assessments were reviewed and abstracted. The abstraction tool, included in Appendix A, was developed by a contractor and is based on a review of the literature and the 2000 Block Grant guidance, describing the structure of the needs assessment. It includes information about the process used to conduct the needs assessment; the quantitative and qualitative indicators of need; the assessment of system capacity; and the priorities selected based on the needs assessment.

Next, the States' 2004 Block Grant applications were reviewed and abstracted, in order to analyze the relationship between the needs assessment findings and the services provided and funded through the MCH Block Grant. These reviews were followed by in-depth interviews with State officials regarding the process of needs assessment, priority setting, and planning and resource allocation. The interview guide used for these discussions is included here as Appendix B.

The 15 study States were chosen based on interviews with representatives of the 10 HRSA Field Offices to determine which States in each region were best positioned to offer lessons, examples, and promising practices to other States. The goal, therefore, was not to identify the “best'needs assessments or to rate the assessments' overall quality; rather, it was to identify geographically and demographically diverse States from across the country that were likely to offer ideas and practices that would be useful to others. The 15 States selected for the study were: Alaska, California, Colorado, Florida, Iowa, Kansas, Minnesota, New Jersey, New Mexico, Oklahoma, Puerto Rico, Rhode Island, Virginia, Washington, and Wisconsin. However, three of these—Alaska, Minnesota, and Puerto Rico—were unable to participate in the last phase of the study (the follow-up interview) because of bureaucratic reorganizations, staff changes, and other factors. Therefore, the findings presented here are primarily confined to the remaining 12 States.

While States have made great progress in the development of their needs assessments and many have promising practices to offer, many components of the needs assessment are consistently challenging. This report reviews a number of these issues, summarizing our findings across the study States and highlighting those States that reported innovative solutions to these challenges. The next chapter describes the structural aspects of the needs assessment process, including establishment of leadership, involvement of stakeholders, inclusion of local-level needs assessments, and coordination with other systems within the State. The following chapter examines specific components of the needs assessment, including data sources, data analysis methods, assessment of capacity, and establishment of priorities. Chapter IV discusses how the findings of the needs assessment are applied in planning and policymaking, and finally, the report concludes with a summary of the lessons learned by and recommendations of State officials regarding the needs assessment process.

CHAPTER II The Needs Assessment Process

While a strong substantive analysis of needs and resources and a clear linkage of priorities to current needs comprise the core of a needs assessment document, the key to a successful outcome that garners support for MCH needs is the process established to carry out needs assessment. In other words, the process is as important as the product. Granted, a continuous focus on how the needs assessment is conducted and who is involved may complicate the seemingly straightforward process of producing a needs assessment report.

However, the literature and the experience of the Title V States we interviewed shows that the following five process elements can make the needs assessment findings more comprehensive, applicable, and acceptable to the families and communities they will ultimately affect.

• Clear leadership, responsibility, and oversight. The needs assessment should be guided by a clear vision that encompasses the full scope of the needs assessment process, from the identification of indicators to data collection and analysis to the application of findings. This leader or leadership team should also possess the organizational authority to command resources and to marshal data from both public and private-sector sources.
• Expertise. The needs assessment should have access to internal staff or external consultants with appropriate expertise in data analysis and epidemiology.
• Community involvement. The findings of a needs assessment are unlikely to be accepted by those they affect directly—consumers, providers, and other stakeholders—if these constituents were not included in its development. The community can be involved in a needs assessment at all stages, including providing data on needs and capacity (often through surveys or focus groups), responding to needs assessment findings, and selecting priorities based on these findings.
• Creating a local-level process to inform the State-level assessment. While the State is ultimately responsible for the overall planning, design, implementation and monitoring of the performance of a statewide MCH system, local health authorities or communities— where much of the States' Title V and other MCH funds and services are administered— are often best equipped with the information to assess local needs and plan local systems of care. Hence, the incorporation of available local-level assessment information is key for statewide MCH planners to be able to tailor resources based on local needs.
• Coordination with other systems. MCH does not operate in a vacuum, and the Title V Block Grant cannot possibly fund all of the programs and services necessary to meet the needs of pregnant women, children, and families. Therefore, it is critical that the Title V agency work in concert with the other agencies and systems that serve these populations both in assessing priority needs and planning coordinated programs to address them. Examples of such programs and systems include Medicaid and SCHIP, the education system, early intervention, juvenile justice, and welfare and other family support services.

Few of these process elements were described in the States 2000 and 2004 updated needs assessment reports. We learned most about the processes States used in the development of their 2000 needs assessments and the process plans they have for 2005 through the follow-up intensive telephone interviews.

A. Clear Leadership, Responsibility, and Oversight

Several States described the use of a leadership or management team to oversee their needs assessment process. For example, in Oklahoma, an MCH/CSHCN Leadership Team oversaw the State's needs assessment. In Virginia, the process was led by the Management Team of the Office of Family Health Services, which oversees the MCH and Preventive Health Services Block Grants. Since the 2000 MCH needs assessment, many states have established an ongoing needs assessment team within the Title V agency that annually reviews needs and priorities and works together to develop a plan for the more comprehensive 5-year needs assessment in 2005. For example, beginning in January 2004, a team from Florida's Division of Family Health Services developed a step-by-step Title V Needs Assessment workplan with clear assignments of roles and responsibilities for the 5-year needs assessment, including how the State advisory group and other stakeholders' views would be incorporated into the process.

B. Technical Expertise

States' 2000 needs assessments rarely described the technical resources used to conduct data analyses, although a few mentioned the use of both internal and external sources of support. Colorado's 2000 needs assessment referred to the use of an MCH Information Specialist to assist in the analysis an interpretation of data. New Jersey's 2000 assessment described the use of the State's Center for Health Statistics and the MCH Consortium's Data Work Group. The Kansas Title V agency, which depended on technical expertise of an outside consultant group for its needs assessment analyses from 2000 to 2003, has recently hired in-house staff with epidemiological expertise and plans to conduct most, if not all, of the data analysis and interpretation of the data internally, using outside experts only to assist staff and stakeholders in setting priorities.

C. Community Involvement

All States recognize that involving key stakeholders in the MCH needs assessment process is beneficial to their goals. State officials report that they strongly believe that the involvement of diverse perspectives—such as those of consumers, providers, representatives of public and private organizations with potential resources, MCH researchers, elected officials, and advocates for women and children—enables the process of identifying needs setting priorities to be more collaborative and responsive to the public and other stakeholders. The involvement of stakeholders also educates the community and builds a constituency among providers, consumers and others involved in improving the well-being of mothers and children.

The involvement of outside stakeholders in States' Title V needs assessments has varied in the past. Most collected at least some information from consumers or providers through onetime special data collection efforts for the 2000 needs assessment. All study States reported that consumers and stakeholders were at least involved in the review of the MCH needs assessment document or reviewed a summary of the data to provide input on which needs which be Title V priorities. Most State officials thought this was an area of needs assessment process that they could improve upon for 2005. The major avenues for stakeholder involvement in State needs assessments included the following:

• Focus groups and surveys. One approach was to solicit the opinions of families, consumers, and advocates on the needs of their constituents. Iowa's 2000 needs assessment described a survey of advocates on MCH priorities in the State, and New Mexico and Puerto Rico conducted focus groups of adolescents and families of children with special health care needs. While this approach can be effective in gathering information about the opinions and perspectives of consumers and advocates, it does not allow for their ongoing participation in the process or their contribution to the selection of methods or priorities.
• Task forces on emerging MCH issues. Florida is one of several States that has developed statewide issue-focused workgroups or task forces addressing emerging issues, such as oral health care, obesity, and mental health. Florida Title V officials indicated that rather than bring these stakeholders into the Title V needs assessment process, they send Title V agency staff as representatives to these task forces and will be incorporating the findings and reports from these special task forces into their Title V needs assessment.
• Community/Regional Meetings. In the past, Rhode Island and Wisconsin have held listening sessions around the State, which included representatives from the State and Regional Public Health Departments, WIC, current grantees, coalitions, and other interested parties. During these sessions, they discuss the needs of the MCH populations, issues related to statewide projects, and lessons learned. Wisconsin officials have also interviewed the directors of the local public health and tribal health departments to ascertain their views on the needs of the MCH populations. Iowa's CSHCN program conducts regional meetings with local stakeholders, including providers, foundations, educational agencies, and policy makers. Iowa officials indicated that the regional meetings have proven effective in identifying emerging needs and priorities at the regional level as well as providing information on potential resources with which the State can work collaboratively to address unmet needs. For the 2000 needs assessment, the State of Washington conducted five regional meetings with facilitated discussions of service system assets, gaps, and impacts of policy on the MCH population. The information from these meetings was incorporated into issue papers used in the final selection of statewide priorities.
• Advisory Groups. Several States established Advisory Councils to guide the conduct of or provide input into the Title V needs assessment, often including family or consumer representatives. Colorado relied upon an Advisory Council on Health Programs for Women and Children, which includes two parent representatives, for advice in selecting measures and determining priorities based on needs assessment findings. Alaska formed an 18-member Maternal, Child, and Family Health Advisory Committee, including both professionals and parents, to oversee the needs assessment. Virginia used an Advisory Committee on Children and Families, made up of consumers and representatives of community organizations, to review needs
• assessment data. Iowa's Statewide MCH Advisory Council meets quarterly to provide input throughout the annual needs assessment and program planning process. This Advisory Council includes parents, providers, county officials, State legislators, other divisions of the Iowa Department of Health, and State agencies serving children and families. In New Mexico, consumers are intimately involved in the needs assessment process through working groups in every health district in the State. Depending on how these advisory or workgroups are used, this route allows outside stakeholders to give input at various points in the needs assessment process and to offer interpretations of early needs assessment findings.
• Steering Committees. A still higher level of involvement is the inclusion of families or consumers on steering committees that guide and direct the needs assessment process at every stage. For example, in 2000 Minnesota's MCH Advisory Task Force, which included consumer and community representatives, worked with an internal work group at every stage to develop the vision and operational plan for the needs assessment. They reviewed available indicators and identified those with highest priority for inclusion in the needs assessment, and they identified gaps in available data. They also collected, analyzed, and displayed data that might be included in the final document.

Many States reported soliciting input from a range of perspectives. In their most recent needs assessment, for example, California officials involved a variety of stakeholders in a Title V planning group, held interviews with stakeholders, and conducted surveys of providers and parents of children with special health care needs.

At the same time, a few States advised that involving stakeholders at the State or local level in the MCH needs assessment and planning process must be done with caution. Their involvement may raise unrealistic expectations if the State does not have the capability to address the needs or problems raised. However, another State suggested that involving stakeholders during a time of limited resources is critical so that the stakeholders are involved in a process that is designed to reach agreement on priorities for expenditure of limited public funds.

D. Creating a Local-Level Process to Inform Statewide Assessment

Most of the study States are playing an important role in supporting local needs assessments and planning by providing their local or regional health agencies with guidelines, access to data, and technical assistance for conducting local level needs assessment. These public entities are asked to involve consumers, providers and other stakeholders in the needs assessment process, with some States more successful in this effort than others. Examples of the types of local entities that are asked to conduct needs assessment include:

• Local perinatal consortia. The development of local perinatal systems of care often provides an opportunity to establish and nurture local-level coalitions, which in turn offer an opportunity to conduct local needs assessments. Florida provides a consumer-focused local needs assessment model through its Healthy Start Prenatal and Infant Coalitions. Each of these coalitions, supported with Federal and State funding, comprises consumers, providers, and other local stakeholders and is responsible for developing local MCH leadership and systems planning. Their funds are used to build and sustain the coalition, conduct the planning process and provide or oversee services to address the priority needs they have identified. In Virginia, as well, Regional Perinatal Councils are required to conduct needs assessments to document the demographics of their MCH population, the regional perinatal service capacity, health risk and outcome indicators, and qualitative information gathered from a community-level Fetal and Infant Mortality Review process funded by the State.

• General MCH consortia. In New Jersey the State Title V agencies fund regional consortia of providers to develop regional systems of care based on regional needs. Each of the Consortia conducts regional-level planning and needs assessment which is reported up to the State level and rolled into the State needs assessment and Block Grant application.
• County health departments. In many States, county health departments or other local health jurisdictions are required to conduct assessments of need in their communities. California provides data and extensive technical assistance in needs assessment to the State's 61 local health jurisdictions (58 counties and three cities) through the University of California at San Francisco's Family Health Outcomes Project (FHOP). FHOP produced a detailed guidance document for the local health jurisdictions to use in developing their needs assessment. This document includes a detailed outline for the assessment report and a list of indicators to be included; in addition, the data with which to develop these indicators is provided by the State. In the past, local jurisdictions were asked to gather these data themselves, but State officials felt that they would get more consistent indicators if the data were provided to them. Minnesota is another State that included local-level needs assessments in its statewide assessment; the state's Community Health Service Agencies were required in 2000 to conduct needs assessments as part of their biannual planning process, and the needs identified through this process were added to the MCH Indicators Menu for the statewide needs assessment.

As part of the State MCH needs assessments, in each of these examples, the Title V agency works to incorporate the local-level assessments into a statewide picture of the services available and current MCH needs, and uses the local information to target and tailor technical assistance and training. However, some States cautioned that it is difficult to systematically present and incorporate the local assessments because they contain a large amount of qualitative information on needs and system capacity. To remedy this for the 2005 needs assessment, one of these States was considering the use of qualitative analytic software to analyze the content of the local assessments.

E. Coordination with Other Systems

A few of the study States described how an integrated approach to planning across State agencies has helped garner and maintain support for MCH programming. For example, in Rhode Island, the director of the Title V agency participates in an executive-level interagency body called the Children's Cabinet. The Cabinet, which was created by legislative mandate and reports to the Governor, is composed of the directors of each State agency serving children and families along with a representative of the State's largest private children's advocacy and resource organization (RI Kids Count). The Cabinet members work together to plan and monitor State policies and legislative initiatives affecting children. They have established a common set of goals and performance measures for all State agencies working to improve the health and welfare of children. The Title V director indicated that his agency's involvement in the Cabinet is critical to improving MCH in Rhode Island and the goals and priorities developed by the Cabinet drive MCH policy and program planning in the State. Their active participation in the Cabinet has increased the profile of MCH issues and systems and has helped the health department to think "out of the box" of public health. Their participation has also built support across both public and private agencies and in the State legislature for the maintenance of existing MCH systems and services, and has increased support for seed money toward the development of new infrastructures for emergent MCH health needs.

Another example of the integration of State MCH needs assessment into a broader planning process comes from Iowa. In this State, the MCH needs assessment process is tied to the goals and actions steps outlined in Healthy Iowans 2010, a State companion to Healthy People 2010. Because State MCH staff and stakeholders have been involved in documenting the State's MCH needs and defining priority MCH-related goals for Healthy Iowans 2010, the State's Title V MCH priorities have always been consistent with and drawn from this broader State public health planning document. At the same time, the State Title V leadership in Iowa, which directs an ongoing MCH needs assessment process, is incorporating issues that have emerged since the first publication of Healthy Iowans 2010 into the revised version to be released in 2005.

Virginia's Title V agency works collaboratively in a State-level interagency planning committee focused specifically on MCH issues. The committee comprises representatives of the State Medicaid agency, Title V agency, Social Services and Mental Health that meet quarterly to address MCH issues that cut across program lines. They have worked together on a volunteer basis to successfully alleviate barriers to Medicaid enrollment for pregnant women. The group is now examining how the State can improve screening for substance abuse, domestic violence and maternal depression by private providers.

These examples illustrate how a systematic needs assessment process that has clear roles and leadership, includes staff with technical analytic expertise, involves diverse community stakeholders, and that is integrated with other local and State planning efforts for the MCH population may greatly enhance the potential for the needs assessment findings to be translated into program planning for the development of an effective MCH system.

There are two broad substantive component areas that are essential to any needs assessment: assessment of needs and the capacity of the system to meet identified needs, and establishment of priorities. In the following chapter, the contractor identified criteria for a successful assessment in each component area, analyzed the abstracts of 15 States' 2000 Title needs assessments in accordance with these criteria, and reviewed new directions or methods that under consideration by the States for their 2005 needs assessments.

CHAPTER III The Components of a Needs Assessment

A public health needs assessment does not stand alone; rather it is a critical step in a larger process of program planning and evaluation. As Stevens and Gillam (1998) note, "the purpose of needs assessment in health care is to gather the information required to bring about change beneficial to the health of the population." Within this broader framework, acknowledging that the components of a needs assessment cannot be separated from the processes used to develop it and the presentation and application of its findings, in this chapter we focus in on the needs assessment process itself, particularly three components:

• Collection and analysis of information on health needs. The first component of a successful needs assessment is the collection and analysis of information on the extent of health problems using data from a variety of sources. The data should be drawn from a range of health indicators for the three priority MCH populations: pregnant women, mothers, and infants; children; and children with special health care needs. Ideally such indicators should include both quantitative and qualitative measures, include State-level data as well as more geographically or subpopulation-specific targeted data when available, and be drawn from the most up- to-date data sources. The analysis should include point-in-time data and trend analysis and
• Capacity assessment. Complementing and essential to the analysis of the population's needs is an assessment of the capacity of the system to meet those needs. Ideally, this includes an analysis of the availability, accessibility and quality of existing resources— both internally to Title V and throughout the systems of care serving mothers and children—as well as an effort to uncover resources, both individual and organizational, that can be brought to bear to address the identified needs.
• Priority setting. The final step in the assessment process is the establishment of priorities among the multiple needs or problems identified and the presentation of those priorities to stakeholders, both those who have been involved in the needs assessment process and those not involved who can have a positive impact.

The following sections of this chapter discuss these three broad components of needs assessment. In each section, criteria for successfully carrying out each component are identified, based on the literature and lessons learned from the contractor's abstraction of the study States' Title needs assessment and planning documents and follow-up telephone interviews with most of these States. Also included are examples drawn from the experiences of the States that may be useful or applicable to other State and local MCH needs efforts.

A. Assessment of Health Needs

1. Indicators of Need

One of the elements of a successful needs assessment is the use of a range of health indicators of the three priority MCH populations: pregnant women, mothers, and infants; children; and children with special health care needs. In addition, crosscutting measures of the health of the population as a whole can reveal needs that affect MCH populations. These health indicators can expose the strengths and weaknesses of a population and reveal health issues that need to be addressed. In order to achieve this, a thorough needs assessment should include the following criteria:

• Indicators related to the 18 national performance measures, as well as measures of demographics, health status, and outcomes;
• Qualitative measures of health status, especially from the perspective of consumers, in order to identify the perceived needs of a population;
• A variety of measures beyond the traditional MCH indicators, to provide a more in-depth picture of the health status of a population; and
• Indicators that are specific to the health of the State MCH population and do not stray from the purpose of the needs assessment, so that the analysis of needs and capacity is focused.

The indicators commonly reported by States are displayed in Table 1 below. Very few States addressed all of the above criteria in their needs assessments; more commonly, States were thorough in particular areas. Although none of the States included data on all 18 of the national performance measures, twelve States did address at least two or more. The most commonly addressed were “the rate of birth for teenagers aged 15 through 17 years' and “the percent of very low birth weight infants among all live births,'each measured by nine States. Also common were “percent of 19- to 35-month-olds who have received the full schedule of age-appropriate immunizations' and “percent of children without health insurance,'each measured by eight States. “Percentage of mothers who breastfeed their infants at hospital discharge'was measured by seven States, and “the rate of suicide deaths among youths 15-19 and “percent of infants born to pregnant women receiving prenatal care beginning in the first trimester” were each measured by six States.

Many of the needs assessments included demographic data to provide an overall view of the State's population. Some of the statistics that were commonly mentioned by States include: population characteristics, poverty rate, Medicaid and/or SCHIP eligibility, insured rate, and Head Start enrollment. Every State also included typical health status indicators for the MCH population. Some of the frequently mentioned indicators for pregnant women, mothers, and infants include: rate of tobacco, alcohol, or drug use before or during pregnancy; prevalence of domestic violence during pregnancy; rate of birth defects (especially neural tube defects); and rate of LBW/VLBW births. Some common health status indicators for children include: occurrence of overweight/obesity; youth alcohol, drug, and tobacco use; seatbelt use among youth; and the prevalence of weapons and violence in schools. States included far fewer indicators of health status for CSHCN. Some that were measured include: asthma occurrence and hospitalization rates, common conditions/diagnoses, severity of conditions, ability to perform age-appropriate activities, and availability of specialty providers.

Every State also included outcome measures as indicators of need in their assessments. The number and type of outcome measures varied widely among states, and very few states included outcome measures for CSHCN. Although many States included outcome measures for pregnant women, mothers and infants, there was little commonality among states in the measures that were chosen. A few of the most common include infant mortality rate, maternal mortality rate, and perinatal mortality rate. The outcome measures for children were slightly more homogeneous among States and include: child and teen death rates, injury-related death rate, adolescent homicide rate, motor vehicle crash death rate, and total number of drowning deaths. Some of the outcome measures for CSHCN include asthma death rate, infant mortality rate by birth defect, and the percentage of births affected by fetal alcohol syndrome.

Seven States included qualitative measures, although most included data for only one or two indicators. Florida included five qualitative health indicators, most of which were measured through consumer feedback. Two Florida indicators were measured through consumer focus groups (the factors affecting poorer pregnancy outcomes for black women and possible medical reasons for racial disparities in infant mortality), and two were measured through a consumer survey (stability of CSHCN health, and overall rating of the health status of CSHCN). The Wisconsin needs assessment included key informant interviews of county health department directors, tribal health center directors, and the director of the Milwaukee

City Health Department. These interviews enabled State officials to obtain qualitative data on health care access, child care availability, dental access for children, and the increasing number of special needs children in the State.

Many States moved beyond general population data and typical MCH health indicators in their needs assessments, and also used a variety of interesting and original indicators to measure the health status of their MCH populations. For instance, the Alaska needs assessment included a measure of the percentage of women receiving breast exams or pap smears, the percentage of WIC participants with anemia, and the percentage of mothers who binge drink after delivery. Colorado included the percentage of women with inadequate weight gain during pregnancy, the percentage of mothers who put their infants to sleep on their backs, and the percentage of WIC clients who are classified as obese. The Iowa needs assessment included the percentage of safety seats that are properly installed, and Minnesota included several interesting indicators such as the percentage of adolescent pregnancies that end in abortion and the percentage of parents who read or tell stories to their children three or more days a week. The New Jersey needs assessment included the percentage of pediatric cases of vaccine-preventable illness, as did Virginia, which also included the rate of non-induced pregnancy terminations and the proportion of women eating more than five servings of fruits and vegetables a day.

Overall, the Rhode Island needs assessment addressed all of the criteria mentioned above. It included half of the national performance measures, as well as a qualitative measure of the knowledge, attitudes, and practices of adults with regard to their relationships with their teenagers, obtained through a statewide telephone survey of parents. Other interesting Rhode Island indicators were: the prevalence of open neural tube defects, the type of contraception used by women at family planning clinics, the percent of children who did not visit a dentist in the past year, reasons for childhood hospitalizations, and children's use of safety seats, safety belts, and bicycle helmets. A number of indicators for CSHCN included: the rate of babies born with birth defects, the ten most frequent congenital anomalies among newborns, and the number of children hospitalized for brain-related injury (and of those, the proportion requiring institutional or professional at-home care).

The Kansas needs assessment included an array of indicators and addressed all of the above criteria except for qualitative measures. Kansas addressed almost all of the national performance measures. Their variety of indicators included: the percentage of children from WIC households who are overweight, the rate of safety equipment use among children, and the percentage of CSHCN patients who had to travel more than 100 miles to receive services. The indicators chosen focused on the MCH population without clouding the assessment with an excess of generalized data.

2. Data Collection and Analysis Process

Key to the construction of a successful Title V needs assessment is the identification and use of available data sources to describe the elements of MCH needs. Also important is the development of additional sources of data when need can not be adequately analyzed and presented with what is most readily available. The critical components of the data collection and analysis process include:

• Use of State level data as well as more geographically targeted level data when available. Some indicators and situations are best described on the State level or do not tend to vary much across local areas. In these cases, State-level data are completely appropriate. However, some indicators often vary by region or locality. Because both types of situations exist within States, the data used to conduct the needs assessment should attempt to include data at the local level.
• Use of both quantitative and qualitative studies (focus groups and key informant surveys) as data sources. Different types of needs are best explored and described using different types of data. For example, incidence and prevalence can best be described using quantitative data. Programmatic impact can best be captured using qualitative studies. Because both of these types of information are necessary for a thorough needs assessment, it is important that both types be used.
• A means of identifying unmet data needs and collecting primary data to fill those data gaps (e.g., special key informant surveys or focus groups). The needs assessment should present a detailed picture of the MCH needs of a State. As part of the process it is then important to determine the degree to which needs can be adequately described with what is available. When it is determined that needs cannot be adequately described, the needs assessment process should describe a process by which the data can be developed to adequately describe and evaluate the need. This will allow a final needs assessment to be complete and thorough.
• Identifying and analyzing appropriate/relevant data available from other State agencies and MCH-related organizations. While it is easiest to work completely within the State Health Department, other State agencies and offices collect MCH data as well. It is important, in order to paint the most complete picture of MCH need and capacity, to work with and analyze data from other State agencies and organizations working within the State who address MCH issues.

Most of the study States were able to use a combination of State level and more geographically targeted data. Several States (e.g., Colorado, California, Florida, Iowa, Minnesota, and Oklahoma ) were able to use State-level data from national data collection efforts such as PRAMS, the BRFSS, the YRBS, and the Youth Tobacco Survey. Many States used State Health Department data for their needs assessment that was captured on the county or health district level. States also had access to or developed specialized State-level data collection efforts that were able to report generalizable data on a more local level. In Colorado, a State marketplace analysis was conducted, while in California exclusive breastfeeding was reportable on a sub-State level because the results were taken from their Maternal and Infant Health Assessment Survey. In Florida, the KidCare survey provided local level data and the same was true in Oklahoma from the Toddler Survey.

While all needs assessments reflected the use of quantitative data, some needs assessment documents relied very little on qualitative data. For the most part, however, needs assessments reflected a combination of quantitative and qualitative sources. In Florida, for example, in addition to the quantitative data, information and results from Healthy Start Coalition service delivery plans, the Family Voices Survey, and a key informant survey on State MCH needs were incorporated into the needs assessment. Kansas conducted interviews and Minnesota included results from an Urban Institute family survey, while New Jersey incorporated data from FIMR teams and the Family Voices survey. Iowa conducted focus groups on children's mental health care needs. New Mexico used interviews and focus groups pertaining to transition services for youth with special health care needs for the needs assessment and Washington utilized results from focus groups with parents of children with special health care needs. Oklahoma conducted focus groups around the State with 125 recipients of assorted Title V services.

Wisconsin represented a bit of an anomaly. They used some quantitative data but very little. The quantitative data they presented was chosen to illustrate the concerns expressed in key informant interviews that were conducted in order to find out what needs should be focused on.

Many States used data from sources other than their health department. Some of these were governmental and some were extra-governmental. Predominant among other departments was education, often the focal point for the collection and analysis of YRBS (middle and high school) data. Additionally, California reported using Family Voices data as well as Police Record Reports. Florida used the Florida KidCare survey as well as well as the Family Voices survey; New Jersey also used the Family Voices survey as a source of data. Rhode Island used KidsCount data, while Iowa , working with the Department of Social Services, utilized the results of newly enrolled SCHIP families regarding dental care access. In Kansas, data were obtained from KS Dept of Human Resources, the KDHE Injury Prevention Program as well as from Medicaid claims, the State departments of Education, Office of Judicial Administration, Social and Rehabilitative Services, and Transportation.

Kansas' s data were also obtained from the Kansas Hospital Association and the physician licensure database. Minnesota, in addition to using public safety data, worked with the State planning agency as well. They also obtained data from Abbott Labs and the Urban Institute. Oklahoma worked with the Health Care Authority as well as the Department of Public Safety, while Virginia used reports obtained from the Department of Social Services as well as the State police.

3. Identifying New and Innovative Data Sources

In discussing their plans for the Title V 2005 needs assessment, State officials expressed confidence about their ability to analyze quantitative data and enthusiastic about new quantitative and qualitative data sources available to them, including a new emphasis in some States on gathering information from consumers and providers. Major new sources of note included:

• New national surveys with State components. Two modules of the State and Local Area Integrated Telephone Survey (SLAITS) are now, or will soon be, available for analysis on the State level: the National Survey on Children with Special Health Care Needs (NSCSHCN) and the National Survey of Children's Health. Many States discussed analyzing the NSCSHCN to address critical questions (and several National Performance Measures) about systems of care for CSHCN, a capacity they have not had in the past. Colorado and New Mexico also mentioned using the National Survey of Child Health, a more general survey about child health and well-being, although this data set is not yet available at this writing.
• Other States, such as Colorado, Washington, and New Mexico, discussed having access to the Pregnancy Risk Assessment Monitoring System (PRAMS) for the first time, or now having data from multiple years, allowing for trend analysis. Oklahoma and Washington also mentioned the Youth Risk Behavior Survey as a new data source in their States.
• State-level surveys. A number of States described new sources of State-level survey data that will be available for 2005. The California Health Interview Survey, to be conducted every 5 years by UCLA, will have information on chronic conditions and risk factors for 55,000 respondents, and will provide a rich resource for needs assessment data. Oklahoma has a new oral health survey and a survey on care received by Medicaid eligibles. In Iowa, the Department of Public Health, in conjunction with the Child Health Specialty Clinics and the University of Iowa Public Policy Center, will be conducting the Iowa Child and Family Household Health Survey. This large, comprehensive State telephone survey is designed to evaluate the health status, access to health care, and social environment of children in the State. In Florida, new Geographic Information Systems (GIS) mapping capabilities will allow for better analysis of needs at the local level.
• State surveillance data. Several States have improved their public health surveillance systems, providing new sources of population-based data on important health conditions. For instance, Colorado will have oral health surveillance and hearing screening data available, and Washington will have birth defect surveillance data.
• Linked State data. Finally, several States described newly-available linked databases that will allow for more detailed analysis of perinatal and program data. These include new linked birth record data in Wisconsin, and the linkage of SSDI data in Oklahoma. In Florida, data linkages will allow for Medicaid, WIC, and Healthy Start flags within vital records. In addition, Florida and Kansas are using the Perinatal Periods of Risk approach to conduct in-depth analysis of their fetal and infant death rates.

A number of States also hope to utilize data from other programs to assess the needs of their MCH populations, although accessing such data can be problematic due to confidentiality concerns. One State plans to use Food Stamp Program data, while another has tried to access Medicaid/SCHIP data without success.

4. Capacity Assessment

For strategic program planning, a state's assessment must examine not only the trends and emerging health issues among the maternal and child health population, but also include an assessment of the services and resources that are available and needed to help the Title V agency address those issues. A comprehensive analysis of MCH capacity should answer five assessment questions:

• What resources and services are available to serve the State's MCH needs?
  This would include an inventory of services provided by Title V and other public and private agencies, at all levels of the MCH pyramid and ideally a quantitative assessment, of the extent of available services relative to the population needs.
• What factors affect the accessibility or quality of available MCH services? This would include an assessment of barriers to service accessibility as well as needed changes to services that could improve their accessibility. Such an analysis should include analysis of the perspectives of multiple stakeholders including the end-users of MCH services (e.g. local health departments who utilize information from State databases, public and private providers who need training and information, and consumers of services)?
• What is the community-level MCH capacity? This would include both the incorporation of local service capacity assessment into the State assessment as well as an inventory of available resources and assets at the community level that could partner with MCH, such as voluntary organizations, providers, community leaders, and community institutions.
• What environmental factors are impacting the MCH population's service needs and the agency's resource allocation decisions? Such factors may include changes in State demographics, expansions of Medicaid, State budgetary limitations, welfare reform, and the shift of the publicly insured population to managed care arrangements.
• What is the internal capacity of the Title V agency? An internal capacity assessment involves an internal look by the agency at its strengths and needs in order to carry out the needed MCH functions. The ideal internal capacity assessment includes an examination of following: the health department's management, legal authorities, infrastructure, financial and staffing resources, inter and intra-organizational relations, the cultural competency of its staff and services, and other organizational resources.

While none of the State documents reviewed addressed all of these five components of capacity assessment within the needs assessment portion of their block grant application, they each addressed at least one. The strength of the States' capacity assessments fell primarily in their analysis of the availability of health care and related enabling services for the target MCH populations.

Overall, these assessments were weak in assessing the needs for core public health services and their internal capacity to carry out these functions. Further, while several States appropriately linked their analysis of capacity to their ability to address their identified priority health needs, most did not. Hence, the goal of capacity assessment -- i.e., to analyze the ability of the current MCH systems and services to address the MCH's population's service needs at all levels of the MCH pyramid, was often overlooked in the Title V Year 2000 needs assessments.

The sections below provide a flavor of the types of capacity assessment, the relative depth of these analyses, and examples of data sources that were used when analyzing MCH capacity in the States.

5. Assessing Availability of Resources and Services

The majority of States' needs assessments included some level of analysis of the availability of health providers and direct health care services for specific MCH target populations. As illustrated in Table 2, the states varied considerably in the number of services and types of providers that were the focus of their assessment.

a. Direct Health Care Services

Nine States analyzed the availability of primary care providers (physicians and/or allied health professionals) and mapped or listed the federally designated health professionals' shortage areas (HPSAs) within their State. The availability of dentists to serve low-income children was a significant capacity indicator in six State needs assessments. These States measured dental provider availability using one or more of the following measures: the proportion of dentists and clinics providing some Medicaid dental services for children, the number of dentists serving children at outpatient dental clinics, and federally designated Dental HPSAs.

The majority of States also examined the number of MCH services available through one or more types of institutional providers or service settings. When writing up this part of their needs assessment, most States simply described the size of the service capacity, as measured by the number of particular services or clinic sites and in some cases the numbers of clients receiving a particular type of service. However, only a few States looked at the geographic distribution of services and analyzed areas with gaps in services. Fewer still had data comparing the amount of available services to the size of the population in need of those particular services.

As illustrated in Table 2, seven States focused their service capacity assessment on the availability of specialty and subspecialty services for CSHCN, a population group for which assurance of comprehensive coordinated service is a key performance measure for State Title V agencies. Four States looked at the availability of a primary care, medical home for CSHCN, an important measure of service availability for CSHCN. In California, availability of a medical home was able to be assessed as a proportion of all CSHCN in the State system, based on service data input into the CSHCN program database. The other three States based their findings on the availability of a medical home using data from surveys and focus groups with parents of CSHCN.

Because the majority of States have moved away from the provision or administration of direct primary care services for the MCH population, only four States' needs assessments assess the supply (number and geographic distribution) of publicly subsidized outpatient primary health care services for the MCH population. These States happen to be ones that partner with community health clinics and free clinics for the provision of direct MCH primary care services.

A smaller number of States assessed the availability of several other types of direct health services. For example, two States assessed the availability and accessibility of high-risk neonatal intensive care services and birth centers, based on the geographic distribution of those services and data on the proportion of VLBW infants who were delivered at high risk neonatal intensive care facilities. Three States looked at the existing service capacity to provide mental health services for children. Two States analyzed the availability of publicly subsidized family planning services for low-income women and teenagers. This was measured by comparing the number of women receiving subsidized family planning services to the population in need, using a standardized formula developed by the Alan Guttmacher Institute to determine the size of the population of women in need. Other States examined capacity by looking at genetic services and school health services.

Eleven of the needs assessments identified remaining gaps in health insurance coverage and benefits for women and children and selected improving access to health care services as a priority need. Given the recent implementation of SCHIP in 2000 (when these needs assessments were submitted), most of the documents reviewed included a discussion of recent expansions in eligibility for public insurance programs, the specific eligibility criteria for Medicaid, SCHIP and other State child health insurance programs, and how children identified as having a special health care need were covered in these programs. Most States included available data on the number and rate of uninsured children. One State, Washington, looked specifically at the uninsurance rate among CSHCN.

Iowa, Rhode Island, New Jersey, New Mexico, Colorado, Washington and Virginia looked not only at the size of the newly eligible populations but also calculated the number of eligible women and children not enrolled in public insurance programs. They also emphasized the need for new or improved efforts to link these women and families to insurance programs.

b. Enabling Services

In addition to monitoring insurance coverage for women and children and providing outreach to promote enrollment in public insurance programs, many of the States are still providing case management or enabling/supportive services. These come though local health departments and grants to other public or private organizations for targeted services to high-risk groups. The size of the programs and various types of services provided in the States were described in six States' needs assessments.

Eight of the State needs assessments examined the availability and unmet need for family support services to families of CSHCN, including respite care, service coordination, case management and parent-to-parent networks. This measure of capacity was usually assessed descriptively with data on the number of each type of service available and number of clients served, supplemented with information from parent surveys regarding the perceived availability and unmet needs for family support. Minnesota included an assessment of the size of the unmet need for crisis respite care services, based on the average number of families on the waiting list for respite care services.

Four States included an assessment of the capacity of the WIC program using data on the numbers and proportion of the eligible population unable to be served in the most recent year. One of these States, Washington, also noted the number of children receiving health and nutrition screening services at Head Start and State-funded early childhood programs.

c. Population-Based Services

Documenting capacity and unmet needs for population-based services is a more difficult task compared to that for direct or enabling services because there are less data available on the size of the population reached and the population in need. In fact, the needs assessments reviewed provide little analysis of the existing capacity in population-based services. Instead, most include a listing of many population-based services they provide or contract out for, such as lead screening, newborn biochemical screening, newborn hearing screening, injury prevention programs, oral health education and screening programs, SIDS public education, and folic acid education campaigns. Only in a few cases are data provided on the numbers reached or unmet need for population-based services, for example in the area of childhood immunizations.

While not analyzing the capabilities or reach of existing population-based services, many States have identified priority health needs that could be addressed through enhanced population-based services. For example, based on extensive survey data showing limited use of dental services by low-income children, Florida identified the need for expanded publicly funded dental screening programs for children. Similarly, using key informant and parent survey data, Minnesota and Rhode Island identified the need for enhanced early identification and tracking systems for infants and toddlers, special education services for school-age children with disabilities, and transitional services for adolescent CSHCN. In light of alarming indicators regarding substance abuse among pregnant women and domestic violence in Puerto Rico, the Commonwealth's needs assessment identified a need for new population-based screening services for substance abuse among pregnant women and other public awareness, screening and intervention programs to address the issue of domestic violence. Minnesota's needs assessment highlighted data on poverty, hunger and homelessness as risk factors associated with poor health and mental health problems for the MCH population. Minnesota identified a need for new population-based health education approaches that focus on promotion of healthy community conditions and family support to address the underlying causes of poor health outcomes, and raise awareness of mental health problems and resources.

d. Infrastructure-Building Services

While all State Title V needs assessments - at least briefly - mention their involvement in infrastructure building services, only nine States (New Jersey, Minnesota, Iowa, Kansas, Florida, Colorado, Rhode Island, Washington, and Virginia) incorporated any analysis of their capacity and unmet needs in this important core MCH public health function. Each of these States looked at their data collection systems and ways in which the quality and types of information collected can be improved. They looked at ways to integrate or link multiple datasets for assessing the MCH's populations needs and examining causal associations between client characteristics and their health status and outcomes. Many also looked at the need to build local infrastructure for data collection and analysis, as well as local planning.

The second most commonly examined infrastructure-building service was the State's quality assurance functions. Florida, California, Washington, Minnesota, Virginia and Iowa examined one or more of the following aspects of quality assurance: standards of care, quality monitoring and quality improvement efforts, and performance-based contracting and accountability. These six States and Rhode Island also looked at the need for training of health care providers and in some States there was a focus on health and safety training for childcare providers.

New Jersey, Kansas, Rhode Island, Minnesota, and Washington identified the need for the State to continue, expand or initiate consumer engagement, at the community level and in Statewide quality review and planning functions. While several States discussed the need for broad consumer participation and engagement, many focused more specifically on the inclusion of communities of color, new immigrant groups, and on supporting parent-to-parent networks with families of CSHCN.

6. Assessing Accessibility and Quality of Available Services

The majority of States did not assess the accessibility and quality of available services. Of the group that did, the most information was available on accessibility and quality of services for CSHCN. Florida, Minnesota, Virginia and Washington incorporated extensive information in their needs assessment on access issues for CSHCN. These included the accessibility of: primary care, specialty services, appropriate tertiary care, and assistive technologies in various geographic regions of the State, as well as parents' perceptions of provider attitudes and quality of the primary care and care coordination services available to their children. Data from local capacity assessments provided a rich source of data for Florida to assess factors affecting the accessibility of prenatal and pediatric care. Iowa conducted a special needs assessment to examine factors affecting the accessibility of mental health services for children. The cultural competency and accessibility of MCH services to minority and multicultural groups was the focus of qualitative data collection efforts in Iowa , Florida Wisconsin, Minnesota, New Mexico and New Jersey and Virginia. Minnesota, New Mexico and Virginia conducted surveys of service providers at publicly funded clinics and consumer focus groups on the issue of cultural competency and ways to improve accessibility of MCH services for families from other cultures, including communities of color.

7. Examining Structural and Environmental Factors Leading to Change in Title V Capacity Needs

The environmental factors and policies with the most effect on Title V in recent years were the expansion of Medicaid and SCHIP and the shift to managed care and their potential effect on Title V services and health care. Seven States looked at the changing role of Title V as most Medicaid eligible women and children have been required to participate in a managed care arrangement. Capacity-related issues raised include: the need for ensuring MCH interests are addressed in State Medicaid contracts with managed care organizations, potential legal controversies regarding population-based MCH data collection and monitoring in a managed care environment, involvement of local health departments as contractors in the provision of primary care, the State's continued role in quality assurance and monitoring, the continued need for assurance of care coordination for CSHCN, the need to focus on enabling and population-based services to reduce racial disparities in healthcare access and outcomes, and the need to improve cultural competency of the existing system serving women and children.

Several States also discussed the changing demographics of their MCH population as a result of recent influxes of immigrants from many different parts of the world. Given that the new immigrants were coming from many cultures and speak many different languages, these States highlighted the need to focus on improving the multi-cultural competency of staff. Secondly, they focused on the importance of using multi-cultural competency as a standard in designing and reviewing the quality of direct, enabling and population-based MCH services.

8. Assessing Internal Organizational Capacity

The definition of capacity assessment in public health includes and internal organizational assessment, that includes an assessment of a health department's management, legal authorities, infrastructure, staffing, inter and intra-organizational relations, its cultural competency and other organizational resources. While the tools for assessing MCH internal capacity are still in the developmental stage, we assessed the extent to which internal organizational needs were documented as part of the needs assessments and thus could be used to inform the strategic planing process and decisions about allocation of resources.

As noted in the section above on infrastructure-building services, most of the States examined their internal capacity for data collection and data analysis. Specific enhancements to State data systems and capacity included the need for infrastructure changes to allow MCH link databases and to make data more available and usable by local health departments and researchers. A few States discussed the need for specialized data collection efforts including PRAMS, maternal mortality reviews, fetal and infant mortality reviews, child mortality reviews, and special surveys to allow the State to better assess concerns such as domestic violence, perinatal substance abuse, and youth-risk and health-promotion behaviors.

Several States identified specific gaps in internal staff capacity, e.g. in the area of monitoring the quality of care for CSHCN in managed care, in MCH epidemiology, and staff, interpreters and resources to conduct outreach, translate materials and adapt culturally specific health assessment or treatment approaches.

Finally, while most States provided long lists of Title V agency partnerships and advisory committees, only a few States assessed the weaknesses or gaps in their collaborative relationships. For example, Washington and Minnesota cite the need for Title V to enhance its role, in collaboration with the Department of Education, for the planning and assurance of transitional services for adolescents with special health care needs. Virginia cites the need for improved coordination between the Departments of Health and Mental Health, Mental Retardation and Substance Abuse Services as well as the need for improved coordination and integration of various public and private systems of care for CSHCN.

9. New Directions for States' Capacity Assessment

While capacity assessment was not a focus of many States' needs assessments in 2000, it is of growing interest to many of the study States. For instance, in Rhode Island, the Title V agency is looking more closely at ways to measure the capacity of systems to provide a medical home for all children. In addition, since 2000 all of the study States have received State Early Childhood Comprehensive Systems (SECCS) Planning Grants funded by MCHB.

States have used these grants to assess capacity at the system level using a variety of data sources, including primary data collection (interviews and focus groups) with stakeholders, resource mapping, program and provider data, and other State and local data sources. Several State officials told us that they would be incorporating these findings into their 2005 needs assessment. Some States are also beginning to look at the capacity of the existing systems to provided needed oral health care for children, particularly uninsured children and those with public coverage.

Internal capacity assessment has taken on a greater importance as State Title V agencies continue to evolve from providers of direct service to the public health functions of education, infrastructure building, assurance and monitoring. Many of the study States have or are planning to utilize the recently revised and streamlined Capacity Assessment for State Title V (CAST-5) tools in this effort. Florida and Colorado, for example, were pilot States for the complete set of revised CAST-5 instruments, and California, New Jersey and Virginia have used or are planning to use a number of the revised CAST-5 tools for their 2005 needs assessment. Colorado officials particularly appreciated being able to select the modules of the tool that were the most useful to them; their analysis highlighted needs in the areas of data capacity and staff capacity in particular.

While CAST-5 provides a useful tool for assessing internal capacity, many States reported assessment of capacity across the system as a whole to be a challenge. Washington State officials noted that, since their agency does not provide direct services, they have no influence on the capacity of the system to serve patients. In addition, although they were able to discuss issues such as the effect of environmental changes such as managed care and welfare reform on access to care, they did not have clear measures of the accessibility, availability, and affordability of services. California officials also noted that they relied on anecdotal reports regarding access to providers, particularly for CSHCN, in the absence of quantifiable measures. New Mexico has access to a number of traditional capacity indicators due only to the unfortunate fact that a majority of their counties are designated as health provider shortage areas.

Table 2: States' Assessment of Supply and Availability Of Direct Health Care and Enabling Services for MCH Populations

B. Setting Priorities and Putting It All Together

The next step in the development of a successful needs assessment is synthesizing the findings of the various analytical efforts into a unified, coherent statement of the State's MCH priorities. This is a complex task, as it involves balancing and integrating information from various sources, along with the less empirically-based preferences and priorities of a wide range of stakeholders. The presence of the following elements may help to simplify this task.

• Local participation. The needs assessment should utilize input from local constituencies, including local health agencies and consumers, in identifying priorities. Consumer, advocacy, or local provider organizations may offer insight into regional or local issues that affect the populations they know best.
• Defined methodology. The needs assessment should include a specific protocol and set of criteria for ranking and prioritizing the needs identified by the assessment.
• Integration. The capacity assessment analysis should be integrated with the assessment of needs. Analyzing the needs in the context of the system capacity, and vice versa, will reveal the gaps in the system that contribute to needs going unmet, and will highlight the areas of need that can be addressed most successfully through systems changes.
• List of priorities. A comprehensive list of priorities should be included in the needs assessment document. Health status and outcome goals, quantitative and qualitative capacity assessment goals, and internal capacity assessment goals should