MEASURING
AND MONITORING YOUTH TRANSITION EXPERIENCES is important
to determine if programming is effective. States and other
agencies can use existing data sources to track the effectiveness
of their programming. Data sources are listed with their
web sites and some examples of how data from local surveys
can be compared with data from these sources. KY TEACH Project
(Kentucky’s HRTW Project) data are used in the examples.
This list is not comprehensive but offers a sample of respected
data sources.
• DATA
• Federal Agencies
US Government’s Gateway to Disability Information
www.disability.gov
In the Search field type “Disability Statistics” for a list of a variety of statistical sources. Click on the “Health” tab at the top to find health information; one category along the left margin is disability statistics.
HRSA/ MCHB - Title V Systems Information Data
www.mchdata.net
Data from 59 U.S. States, Territories, and Jurisdictions are from the States' annual Block Grant applications and reports. Data on number of children and youth with special health care needs served by State Title V Programs. Block Grant report and status on progress to meet performance measures.
FEDERAL INTERAGENCY FORUM ON CHILD AND FAMILY STATISTICS
Child and Family Statistics - Childstats.gov
www.childstats.gov/
This web site offers easy access to federal and state statistics and reports on children and their families, including: population and family characteristics, economic security, health, behavior and social environment, and education. Reports of the Federal Interagency Forum on Child and Family Statistics include America's Children: Key National Indicators of Well-Being, the annual Federal monitoring report on the status of the Nation's children. The Federal Interagency Forum on Child and Family Statistics was founded in 1994. Executive Order No. 13045 formally established it in April 1997, to foster coordination and collaboration in the collection and reporting of Federal data on children and families.
CENTERS FOR DISEASE CONTROL
BEHAVIORAL RISK FACTOR SURVEILLANCE SYSTEM (BRFSS)
www.cdc.gov/brfss/
This survey, conducted through the Centers for Disease Control, provides annual state-level data based on a randomized sample of the general adult population. Information is gathered regarding usual source of health care, insurance coverage, and employment status broken down in age categories including ages 18-24 so it is particularly useful in measuring indicators related to successful transition to adult health care. Some states have added questions to this survey to obtain data on particular health conditions (such as asthma, diabetes, and depression) and more information on health care costs and barriers.
Examples: 33% of Kentucky Commission graduates and 20% of Shriners Hospital, Lexington, graduates say they have no health insurance as compared with 28.5% of 18-24 year olds in Kentucky and 27.3 of 18-24 year olds in the US (from the 2000 KBRFSS); 30% of Commission and 25% of Shriners Hospital, Lexington, smoke compared with 35.1% of Kentucky young adults ages 18-24 (2000 KBRFSS).
CDC - National Survey of CSHCN
www.cdc.gov/nchs/about/major/slaits/cshcn.htm and www.cshcndata.org
The Maternal and Child Health Bureau (MCHB) in collaboration with the National Center for Health Statistics at the Centers for Disease Control and Prevention (CDC) sponsored this survey through the State and Local Area Integrated Telephone Survey (SLAITS). States are provided with a prevalence rate for the broadly defined population of children with special health care needs. Data are just now becoming available in areas of medical home, adequacy of insurance, access to services and family satisfaction and participation in decision making. MCHB plans to repeat this survey every four years.
NATIONAL CENTER FOR HEALTH STATISTICS
National Health Interview Survey (NHIS conducted yearly) and National Health Interview Survey-Disabilities (NHIS-D last conducted in 1997) conducted by the National Center for Health Statistics
www.cdc.gov/nchs/nhis.htm
National Center Health Statistics has two major types of data systems: systems based on populations, containing data collected through personal interviews or examinations; and systems based on records, containing data collected from vital and medical records. The web site describes the surveys and results and offers access to Health US, latest year, which summarizes health surveys. The NHIS-D is a telephone survey of a randomized sample of children and adults with developmental disabilities, specific health conditions, behavior problems, sensory loss, or physical disabilities. The survey contains questions related to medical home, transition, screening, and access to community-based services. Although data are provided at a regional level, some states have ‘purchased’ additional data collection to acquire state-level data. Questions from these surveys can also be used by states as a model in the development of their own surveys.
Example: 78% of KY Commission and 85% of Shriners Hospital, Lexington, graduates have a family doctor or clinic compared with 75.1% of Americans ages 18-24 (NHIS, 2001).
Medical Expenditure Panel Survey (MEPS)
www.meps.ahrq.gov
This survey uses a nationally-representative sub sample drawn from households that participated in the prior year’s National Health Interview Survey. The objective is to produce annual estimates for a variety of measures of health status, health insurance coverage, health care use and expenditures, and sources of payment for health services. These data are particularly important because statisticians and researchers use them to generalize to people in the civilian non-institutionalized population of the United States, as well as to conduct research in which the family is the unit of analysis. The panel design of the survey, which features several rounds of interviewing covering 2 full calendar years, makes it possible to determine how changes in respondents' health status, income, employment, eligibility for public and private insurance coverage, use of services, and payment for care are related.
DEPARTMENT OF LABOR
Disability Statistics
www.dol.gov.dol/topic/disability/statistics.htm
The Department of Labor's Office of Disability Employment Policy provides limited data on employment of people with disabilities. www.dol.gov/odep
Detailed employment statistics on the overall American workforce can be found at the Department of Labor's Bureau of Labor Statistics www.bls.gov
BUREAU OF LABOR STATISTICS
National Longitudinal Surveys of Youth
stats.bls.gov/nls/home.htm
Survey of young men and women born in the years 1980-84; respondents were ages 12-17 when first interviewed in 1997.
Example: 50% of Commission and 40% of Shriners Hospital, Lexington, graduates are working now compared with 88% of 18-24 year olds in the National Longitudinal Study of Youth; 56% of graduates of the Commission and Shriners, Lexington, live with their parents compared with 40% of young adults in the NLSY and 56% of men and 43% of women aged 18-24 (CPS, 2000).
US CENSUS DATA
www.census.gov
Information about the American population offered in a variety of ways such as state-specific or age group-specific and is useful in comparing information on youth with SHCN with typical populations.
Example: 65% of Commission and 75% of Shriners Hospital, Lexington, graduates had completed high school compared with 85% of 18-24 year olds nationally (US Census, 2000).
Current Population Survey (CPS)
www.bls.census.gov/cps The Current Population Survey (CPS) is a monthly survey of about 50,000 households conducted by the Bureau of the Census for the Bureau of Labor Statistics. The survey has been conducted for more than 50 years and is the primary source of information on the labor force characteristics of the U.S. population. The sample is scientifically selected to represent the civilian non-institutional population. Respondents are interviewed to obtain information about the employment status of each member of the household 15 years of age and older. The sample provides estimates for the nation as a whole and serves as part of model-based estimates for individual states and other geographic areas. Estimates obtained from the CPS include employment, unemployment, earnings, hours of work, and other indicators. They are available by a variety of demographic characteristics including age, sex, race, marital status, and educational attainment. They are also available by occupation, industry, and class of worker. Supplemental questions to produce estimates on a variety of topics including school enrollment, income, previous work experience, health, employee benefits, and work schedules are also often added to the regular CPS
Example: 20% of Commission and Shriners Hospital, Lexington, graduates are married (or ex) compared with 10% of men and 18% of women ages 18-24 in the US (CPS, 2000) and 18.8% of 20-24 year olds (CPS, 1998).
SIPP-Current Population Survey, 2002 and earlier
www.bls.census.gov/cps
Survey of Income and Program Participation (SIPP) - Information on education levels, employment, household statistics. The Current Population Survey (CPS) is a monthly survey of about 50,000 households conducted by the Bureau of the Census for the Bureau of Labor Statistics. The CPS is the primary source of information on the labor force characteristics of the U.S. population.
NATIONAL CENTER FOR EDUCATIONAL STATISTICS
nces.ed.gov
NCES is the primary government agency for collecting and analyzing data that are related to education in the US and other nations.
NATIONAL COUNCIL ON DISABILITY
www.ncd.gov
The National Council on Disability (NCD) is an independent federal agency making recommendations to the President and Congress on issues affecting 54 million Americans with disabilities. NCD is composed of 15 members appointed by the President and confirmed by the U.S. Senate. NCD's overall purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH (NIDRR)
www.ed.gov/about/offices/list/osers/nidrr/index.html
The National Institute on Disability and Rehabilitation Research (NIDRR) provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. Programmatic efforts are aimed at improving the lives of individuals with disabilities from birth through adulthood. Multiple reports focusing on health, education, work, and community participation status of people with disabilities<
Example: Almost 60% of Commission and Shriners, Lexington, graduates who are not working would like to compared with 84% of people 18-44 with disabilities in America who say they would like to be working (NIDDR, 1998).
NIDRR - National Center for Dissemination of Disability Research
www.ncddr.org
Established in 1995, the NCDDR performs research, technical assistance and demonstration activities focusing on the dissemination and utilization of disability research funded by the National Institute on Disability and Rehabilitation Research (NIDRR).
NIDRR - Interagency Committee on Disability Research (ICDR)
www.icdr.us/
A new web site has been developed by the government's Interagency Committee on Disability Research (ICDR) to gather comment sand recommendations on research needs for Americans with disabilities.
SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION (SAMHSA)
National Household Survey
www.samhsa.gov
Summary of findings from National Household Surveys on Drug Abuse
SOCIAL SECURITY ADMINISTRATION
www.socialsecurity.gov
Various reports offer information about Social Security and SSI beneficiaries including use of SSI Work Incentives.
US NATIONAL LIBRARY OF MEDICINE
www.nlm.nih.gov
Home page of the US National Library of Medicine, the world’s largest medical library and the creator of MEDLINE, provides information about library programs; services; links to NLM online services; specialized NLM Web databases; and multimedia features such as the Visible Human Project and Profiles in Science.
• Child, Health, and Disability Organizations
ASSOCIATION OF MATERNAL
AND CHILD HEALTH PROGRAMS
www.amchp.org
The Association of Maternal and Child Health Programs represents state public health leaders and others working to improve the health and well being of women, children, youth and families, including those with special health care needs.
AMCHP accomplishes its mission through the active participation of its members and vital partnerships with government agencies, families and advocates, health care purchasers and providers, academic and research professionals, and others at the national, state and local levels.
AMCHP's mission is to provide leadership to assure the health and well being of all women, children, youth and families, including those with special health care needs.
www.amchp.org/policy/data.htm
With support from cooperative agreements with the Centers for Disease Control and Prevention Division of Reproductive Health, and the Health Resources and Services Administration Maternal and Child Health Bureau, AMCHP considers national and state issues, needs, policies, plans and programs relevant to the use of data and other kinds of information to assess needs, monitor health status and problems, develop policies and programs, and evaluate and assure the quality, efficacy and effectiveness of interventions designed to promote family health. AMCHP collaborates within and across agencies at the national and state level to address the need to integrate data, programs and policy for improved health among maternal and child populations. AMCHP also assists with 2010 Healthy People Objectives and provides leadership, information and assistance in building states' data capacity.
EARLY INTERVENTION RESEARCH INSTITUTE AT UTAH STATE UNIVERSITY
Measuring and Monitoring of Community-Based Integrated Systems for CSHCN
eiri.usu.edu/projects/project.asp?pid=586
The Early Intervention Research Institute is one of the largest research projects at the Center for Persons with Disabilities (CPD). EIRI is an interdisciplinary group of researchers currently funded by a variety of federal, state, and private grants and contracts to conduct research on efficacy questions and other areas of concern, to collect cost and cost-effectiveness data, to develop demonstration programs, to provide technical assistance, and to disseminate information regarding these activities.
NATIONAL ORGANIZATION ON DISABILITY/Harris Survey of Americans with Disabilities, 2000, 2004
www.nod.org/stats
Results of on-line surveys of people with disabilities compared with people without disabilities.
Examples: 70% of graduates of the Commission and Shriners say they go grocery shopping a lot or sometimes compared with 55% of adults with disabilities and 85% of adults without disabilities; 50% of Commission and 55% of Shriners, Lexington, graduates say they go to church a lot or sometimes compared with 47% of PWD and 65% of people without disabilities who attend church at least once a month (NOD/Harris Poll, 2000).
FACCT - FOUNDATION FOR ACCOUNTABILITY
www.facct.org
FACCT: Foundation for Accountability is a national organization working to improve health care for Americans by advocating for an accountable and accessible system where consumers are partners in their care and help shape the delivery of care. FACCT believes that America's ability to create a more responsive health care system depends on informed, motivated consumers who help shape the system and hold it accountable for quality.
CHILD AND ADOLESCENT HEALTH MEASUREMENT INITIATIVE (CAHMI)
www.facct.org
FACCT: Foundation for Accountability has several studies of children and adolescents in progress. Results of an on-line survey of adolescents, A Portrait of Adolescents in America, with the Robert Wood Johnson Foundation are available. Special risk groups with risky behaviors, symptoms of depression, and special health care needs( ages 13-17).
Example: 50% of Shriners Hospital, Lexington, and 37% of Commission graduates perceive their health to be Excellent/very good compared with 64% of teens without special needs and 43% of teen with special needs (A Portrait of Adolescents in America, 2002) and compared with 63% of Kentuckians 18-24 (KBRFSS, 2000).
NATIONAL ADOLESCENT HEALTH INFORMATION CENTER
nahic.ucsf.edu/
The overall goal of NAHIC is to improve the health of adolescents
by serving as a national resource for adolescent health information
and research and to assure the integration, synthesis, coordination
and dissemination of adolescent health-related information.
KIDS COUNT
www.kidscount.org
KIDS COUNT, a project of the Annie E. Casey Foundation, is a national and state-by-state effort to track the status of children in the U.S. By providing policymakers and citizens with benchmarks of child well-being, KIDS COUNT seeks to enrich local, state, and national discussions concerning ways to secure better futures for all children.
DISABILITY STATISTICS CENTER
www.dsc.ucsf.edu
Housed at the University of California, San Francisco, a wide variety of statistical information about people with disabilities is available including: Disability Statistics Reports, Disability Abstracts, and “Disability Watch: The Status of People with Disabilities in the United States.”
CHILDREN'S DEFENSE FUND - Kinship Care State Fact Sheets
www.childrensdefense.org
More than six million children (or 1 in 12 children) are living in households headed by grandparents and other relatives. In many of these homes, there is no parent present due to substance abuse, illness and death, incarceration, abuse and neglect, and other family and community crises. Many of these kinship caregivers do not get the information and services they need for the children they are raising. To remedy this situation, Children's Defense Fund, AARP, Casey Family Programs, Child Welfare League of America, Generations United , and other child and aging advocacy and research organizations have prepared comprehensive state fact sheets. The sheets are available for all states and the District of Columbia at. They include state-specific data on kinship care data, programs, laws, and services.
KAISER FAMILY FOUNDATION - State Health Facts Online.
www.statehealthfacts.kff.org/cgi-bin/healthfacts.cgi?
This new resource contains the latest state-level data on demographics, health, and health policy, including health coverage, access, financing, and state legislation.
SOCIOMETRICS CORPORATION - Data Archives
www.socio.com/data.htm
Sociometrics Corporation is a for-profit research and development firm specializing in social science research applications. Established in 1983 as a corporation in the State of California. The Founder and President of Sociometrics is Josefina J. Card, Ph.D. Sociometrics' mission is to produce research-based products and services for a variety of target audiences. Sociometrics' data archives currently house exemplary data and documentation from over 200 leading studies--selected by expert advisory panels--in seven topically-focused areas: teen sexuality and pregnancy, the American family, social gerontology, disability, maternal drug abuse, HIV/AIDS, and contextual influences on behavior.
• Other Surveys of Youth
National Longitudinal Study of Special Education Students
www.sri.com/policy/cehs/dispolicy/
Study tracked, collected data from, and reported on the experiences
of more than 8,000 secondary school students with disabilities
nationwide for six years. Data were collected repeatedly
from telephone interviews with youth and parents, from school
records for multiple years, and from surveys of teachers
and administrators in the schools attended by sample members.
Descriptive and explanatory analyses provided, including
school performance and school completion, social integration,
arrest rates, employment status and quality, and independent
functioning. The influences of individual and household characteristics
and of school experiences and related services on these outcomes
were assessed.
National Longitudinal Study of Adolescent Health
www.cpc.unc.edu/projects/addhealth/
ADD Health is a school-based study of the health-related
behaviors of adolescents in grades 7 to 12. It has been designed
to explore the causes of these behaviors, with an emphasis
on the influence of social context. ADD Health postulates
that families, friends, schools, and communities play roles
in the lives of adolescents that may encourage healthy choices
or may lead to unhealthy, self-destructive behavior. A third
wave of the study was designed to explore the transition
from adolescence into young adulthood.
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