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Evaluation
Topical Call Supplemental Resources & Links
The Title V MCH 5-Year Needs Assessment & Transition: A Primer for CYSHCN Programs, January 2009 (doc)
An HRTW Practice Brief that describes the needs assessment process. Offers tips for getting started and managing the process, building a leadership team, and lessons learned from previous needs assessment processes. Describes the 6 National Performance Measures for CYSHCN as stepping stones to transition. Includes an extensive list of resources.
Sorting Pieces of the Puzzle for the MCH Title V Needs Assessment: A Toolkit for State CYSHCN Programs & Youth Advisory Councils
HRTW toolkit provides six needs assessment modules for use by CYSHCN and families in assessing transition progress, needs, and opportunities. Each module includes detailed instructions, including process strategies for engaging youth participation, and worksheets. Modules can be used as stand-alone units or in conjunction with one or more of the other modules.
- Overview & Table of Contents (doc)
- Module One: Prevalence
Research Question & Worksheets: What does the NS-CSHCN tell us about the prevalence of YSHCN in our state? (doc)
- Module Two: Health Care Transition
Creating context & building shared understanding about health care transition (doc)
-Sorting Pieces of the Transition Puzzle for the MCH Five-Year Needs Assessment (ppt)
-HRTW Handout: Successful Health Care Transition (doc)
-Reflection Log (doc)
- Module Three: NS-CSHCN Findings
Research Question & Worksheets: What does the NS-CSHCN tell us about how well YSHCN in our state are preparing for transition to adult health care? (doc)
-Needs Assessment Tool for Youth (doc)
-Needs Assessment Tool for Families (doc)
- Module Four: Other Indicators
Research Question & Worksheets: What do other indicators tell us about our health & wellness, especially in regards to other health risk behaviors? (doc)
-Worksheet: Youth Risk Behaviors & Potential Impact on Transition (doc)
- Module Five: Services & Supports
Research Question & Worksheets: What are the services & supports that currently exist that we could use to get information & assistance for our health care transition? (doc)
-Transition Planning Worksheet: Putting the Puzzle Together (doc)
-Inventory of Existing Programs/Services Offering Support for Health Care Transition (doc)
-Needs Assessment Tool: Are transition services culturally inclusive? (doc)
- List of Possible Transition Collaborators (doc)
- Module Six: Recommendations
Putting the pieces of the needs assessment puzzle together to arrive at recommendations (doc)
-Transition Progress & Trends (Executive Summary Block Grant Review FY2009) and
Examples of state activities promoting transition (doc)
-Implementing Transition: Needs Assessment for State Title V CYSHCN Agencies (doc)
TITLE V/MCH NEEDS ASSESSMENT & PERFORMANCE MEASURES
Technical Assistance Workshops
http://128.248.232.90/archives/mchb/needs2004/
Excellent TA resource information, power point slides presentations. Look at both the January and February sessions.
Review of the Title V 5-Year Needs Assessment Process in the States and Jurisdictions. December 2006. Prepared by Health Systems Research, Inc. for MHSA/MCHB.
http://www.mchtaproject.com/Resource_Page.htm
A detailed study of the ways in which States implemented their Title V Needs Assessments in 2005; identifies best practices and promising approaches used by states. The appendices include sample surveys, questionnaires, logic models, worksheets, priority setting tools and innovative models used by states.
HEALTHY & READY TO WORK NATIONAL RESOURCE CENTER
http://www.hrtw.org/index.html
Offers numerous resources and links to other sites that can inform and guide efforts to build a system of care that will assure successful transitions for CYSHCN to the activities and concerns of adult life. Click on the Youth Involvement tab to find good information on assuring that youth with special health care needs participate as decision-makers and as partners. Data Sources to Know lists sites with data on youth and young adults.
Transition for Youth with Special Health Care Needs: How Do We Get this Done? (doc)
An HRTW Practice Brief that summarizes findings and recommendations from an HRTW National Topical Call conducted on May 7, 2008 with Dr. Richard Antonelli and Dr. Patience White, HRTW Consultants, and Dr. Charles Onufer, Illinois Title V CSHCN Director. It delineates a number of key issues facing YSHCN and the health care professionals who serve them as they make the transition from pediatric to adult health care; and, offers strategies for Title V CYSHCN programs and their partners to use in supporting transition.
FAMILY VOICES
National Center for Family/Professional Partnerships
www.familyvoices.org
CHAMPIONS FOR INCLUSIVE COMMUNITIES – ChampionsInC
www.championsinc.org
A national center designed to support communities in organizing services for families of children and youth with special health care needs (CYSHCN).
NATIONAL CENTER FOR CULTURAL COMPETENCE
National Center to support the development of culturally and linguistically competent service delivery systems.
http://www11.georgetown.edu/research/gucchd/nccc/index.html
AMERICAN ACADEMY OF PEDIATRICS
National Center for Medical Home Implementation www.medicalhomeinfo.org
CATALYST CENTER
National Center with data on insurance for children and youth and families http://www.hdwg.org/catalyst/
DATA RESOURCE CENTER FOR CHILD AND ADOLESCENT HEALTH
Children and Youth with Special Health Care Needs Data
http://www.cshcndata.org
Site includes an easy to use, interactive data query feature that allows users to view and compare state, regional and nationwide findings from the State and Local Area Integrated Telephone Survey (SLAITS) National Survey of CSHCN and National Survey of Children’s Health, educational materials, state profiles on key performance indicators.
CENTER FOR DISEASE CONTROL - NATIONAL CENTER FOR HEALTH STATISTICS
- State and Local Area Integrated Telephone Survey (SLAITS)
http://www.cdc.gov/nchs/slaits.htm
National Survey of CSHCN, National Survey of Children’s Health and other surveys of interest to MCH administrators.
- Behavioral Risk Factor Surveillance System (BFFSS)
http://www.cdc.gov/brfss
National and state-specific results of telephone surveys focusing on health behaviors and use of health services. Provides comparison information for CYSHCN from the general population by age groups.
- The Youth Risk Behavior Surveillance System (YRBSS)
Monitors priority health-risk behaviors and the prevalence of obesity and asthma among youth and young adults through in-school surveys.
http://www.cdc.gov/HealthyYouth/yrbs/index.htm
US CENSUS BUREAU – American Community Survey
Annual survey that provides an array of data in addition to traditional demographic data, including education, employment, disabilities broken down by age categories. Click on American FactFinder Link on the ACS homepage.
http://www.census.gov/acs/www/index.html
KIDS Count Data Center – Annie E. Casey Foundation
Easy-to-use data, including state data profiles, on child and youth health and well-being. Includes data for: children in immigrant families, education, employment and income, health, health insurance, population and family characteristics, poverty, and youth risk factors.
http://www.kidscount.org/datacenter/databook.jsp
MCHB State Systems Development Initiative (SSDI)
SSDI, launched in 1993, complements the Title V MCH Block Grant Program. The purpose of the SSDI projects is to assure that the Title V agencies have access to policy and program relevant information and data. SSDI assists State Agency MCH and Children with Special Health Care Needs (CSHCN) programs in the building of State and community infrastructure. SSDI projects aid the Title V agencies with their ongoing MCH Needs Assessments, determining performance and outcome measures, and the setting of State priorities. For the name of your State’s SSDI Director contact Scott Snyder at:SSnyder@hrsa.gov or by calling (301) 443-0345.
SSI DATA ON CHILDREN AND YOUTH
http://www.hrtw.org/hrtwu/data.html Data by year and by state
http://www.mathematica-mpr.com/surveys/survdisabledchil.asp National survey of SSI children and families currently being done by Mathematica
http://www.ssa.gov/policy/docs/statcomps/ssi_children/ SSI Website with most current data with variety of tables
Child Trends
www.childtrends.org
Site has various reports on health and welfare of children, youth, and young adults. See particularly The Transition to Adulthood: Characteristics of Young Adults Ages 18 to 24 in America. (2005, May). S. Jekielek - B. Brown at www.childtrends.org/_docdisp_page.cfm?LID=752E8432-DC4F-4F08-845F028A4BBFE84D and http://www.prb.org/pdf05/TransitionToAdulthood.pdf)
In followup to the discussion on the Topical Call, sample questionnaires to ask young adults about their transition outcomes can be found at: http://www.hrtw.org/tools/check_evaluation.html
Papers describing the results of the Kentucky HRTW project surveys of graduates of the KY Commission for CSHCN and Shriners Hospital in Lexington are:
- Blomquist, K.B. (2006). Health, education, work and independence of young adults with disabilities. Orthopaedic Nursing, 25, 3(May-June), 168-187.
Reports analysis of the first 2 years of surveys of graduates of the KY Commission for CSHCN and Shriners Hospital, Lexington, during KY’s HRTW project and compares the transition progress with data on typical young adults. Promotes transition planning by nurses.
- Blomquist, K.B. (2007). Health and independence of young adults with disabilities: Two years later. Orthopaedic Nursing, 26 (5, Sept/Oct), 296-308.
Reports the results of a follow-up survey of the KY Commission and Shriners graduates 2 years after the initial survey and uses the results to promote the 6 steps of the Consensus Statement to nurses.
Contact kathyblomquist@hrtw.org for more information.
PUBLIC HEALTH INFRASTRUCTURE BUILDING:
AMCHP
Capacity Assessment for State Title V (CAST-5)
http://www.amchp.org/MCH-Topics/A-G/CAST5/Pages/default.aspx
CDC's PATCH (Planned Approach to Community Health) http://www.usmbha.org/Images/Projects/PromoVision/PATCH.pdf
National Association of City and County Health Officials:
MAPP—Mobilizing Action through Planning and Partnership
http://www.naccho.org/topics/infrastructure/mapp/upload/MappPaceApex.pdf
10 Essential Services of Public Health
http://www.cdc.gov/od/ocphp/nphpsp/essentialphservices.htm |
