Data Sources to Inform State Needs Assessments

 

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AUCD polled members of its Council on Research and Evaluation (CORE) in February, 2014 to identify data sources used for statewide needs assessment. A variety of primary sources and reference materials were identified and are noted here. Network members are encouraged to submit additional recommendations to be included on this page.

* indicates the dataset includes data for states and territories. Not all datasets include territorial data. Those datasets that do include territorial data may not include all territories.

2010 Report on the Analysis of the DD Council and UCEDD Plans to Identify Data Sources

This report provided a review of the types of sources used to inform the contents the Needs and Objectives section of the University Centers of Excellence in Developmental Disabilities (UCEDD) Five Year Plan and the Comprehensive Review and Analysis Section of the State Councils on Developmental Disabilities (DD Council) State Plans.

Network members can submit suggested content to acostalas@aucd.org for inclusion on this page.

 


 

American Community Survey (ACS) *

Census tool that samples a small percentage of the population every year -- giving communities the information they need to plan investments and services

https://www.census.gov/acs/www/

Related:

Child Trends:  Children with Disabilities: State-Level Data from the American Community Survey

Children with physical or mental disabilities are a very diverse group, and many face challenges. This research brief pres-ents data for the U.S. and all states on the number and percentage of children (ages birth through 17) who were identi-fied as having at least one disability by the responsible adult in the household responding to the American Community Survey.

http://www.acacamps.org/sites/default/files/images/research/connect/documents/Child_Trends-2012_10_01_RB_ChildDisabilities.pdf

 

ChildStats*

The signature report of the Federal Interagency Forum on Child and Family Statistics, America's Children: Key National Indicators of Well-Being features statistics on children and families in the United States across a range of domains, including family and social environment, economic circumstances, health care, physical environment and safety, behavior, education and health.

http://childstats.gov/

 

Compendium of Health Data Sources for Parents with Disabilities in the United States, 2017 (PDF).

The compendium is a summary of selected national data sources that currently capture health information pertaining to parents with disabilities in the United States. Understanding and using these national data sources is critical for research and advocacy efforts in advancing the knowledge about and the rights of parents with disabilities.

http://heller.brandeis.edu/parents-with-disabilities/

 

Data Resource Center for Child & Adolescent Health (DRC)

Results of the National Survey of Children's Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN)

http://www.childhealthdata.org/ and http://www.childhealthdata.org/browse/rankings

 

Disability Statistics Center

Policy-relevant statistical information on the demographics and status of people with disabilities in American society.

http://dsc.ucsf.edu/main.php

 

Early Childhood Technical Assistance Data (ECTA Center)*

Links to national and state-by-state data, policies and initiatives related to early childhood care and education

http://ectacenter.org/portal/ecdata.asp

 

Early Childhood Longitudinal Program

Longitudinal studies that examine child development, school readiness, and early school experiences

http://nces.ed.gov/ecls/

 

Family and Individual Information Systems Project

Emerging national data on services and supports to individuals with IDD and their families

http://rtc.umn.edu/fisp/

 

Health Professions Shortage Areas *

Areas designated by HRSA as having shortages of primary medical care, dental or mental health providers and may be geographic (a county or service area), demographic (low income population) or institutional (comprehensive health center, federally qualified health center or other public facility).

http://hpsafind.hrsa.gov/

 

IDEA Data Center (IDC)*

Data to comply with IDEA, providing a general state data perspective

http://ideadata.org/ and http://www.ideadata.org/tools-and-products

 

KIDS COUNT Data Center *

Annie E. Casey Foundation's premier source for data on child and family well-being in the US

http://datacenter.kidscount.org/

 

Medicaid Expenditures for Long Term Services and Supports Annual Report

Medicaid expenditures for all LTSS, including institutional and non-institutional settings, by service category and state. The data comes primarily from CMS-64 reports.

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Long-Term-Services-and-Supports.html

 

National Center for Special Education Research

Publications and data products from the Institute of Education Sciences' research programs

http://ies.ed.gov/ncser/pubs/

 

National Core Indicators (NCI) *

Information about outcomes of services and supports for people with IDD who receive ICF and HCBS services.

http://www.nationalcoreindicators.org/ overall program website

http://www.nationalcoreindicators.org/charts/ chart generator that allows state by state comparisons.

 

National Center for Health Statistics

Links to numerous health surveys and data collection systems, and data access

http://www.cdc.gov/nchs/

 

National Longitudinal Transition Study 2 (NLTS2)

Documenting the experiences of a national sample of students who were 13 to 16 years of age in 2000 as they moved from secondary school into adult roles

http://www.nlts2.org/

 

NIH Data Book *

Basic summary statistics on extramural grants and contract awards, grant applications, the organizations that NIH supports, the trainees and fellows supported through NIH programs, and the national biomedical workforce

http://www.report.nih.gov/nihdatabook/

 

NIH: US National Library of Medicine, Health Services Research & Public Health Information Programs*

Links to numerous resources and datasets related to public health and health services

http://www.nlm.nih.gov/hsrph.html

 

Online Statistical Data on the Aging*

Links to online statistical information on the demographic characteristics, health, social conditions, and economic condition of older persons

http://www.aoa.gov/AOARoot/Aging_statistics/census_population/census1990/Introduction.aspx

 

Poverty guidelines*

Updated annually, and referenced in the guidance for your core UCEDD grant application

http://aspe.hhs.gov/poverty/14poverty.cfm

 

Residential Information Systems Project

National annual state data on residential services for people with IDD

http://rtc.umn.edu/risp/build/ (state by state comparison and all issues of report)

http://risp.umn.edu/ (data visualization site)

 

RSA Data*

Customized queries available for numerous RSA datasets

https://rsa.ed.gov/choose.cfm?menu=mb_ahq

 

State and Local Area Integrated Telephone Survey (SLAITS)*

Important health care data at State and local levels, supplementing current national data collection strategies

http://www.cdc.gov/nchs/slaits.htm

 

State of America's Children

Compilation and analysis of the most recent and reliable national and state-by-state data on population, poverty, family structure, family income, health, nutrition, early childhood development, education, child welfare, juvenile justice, and gun violence

http://www.childrensdefense.org/child-research-data-publications/state-of-americas-children/

 

State of the States in DD

A comparative nationwide longitudinal study of public financial commitments and programmatic trends in developmental disabilities services and supports

http://www.stateofthestates.org/

 

StateData Info

National annual state data on employment of people with IDD

https://statedata.info/

 

US Census *

Numerous products and tools to access US Census data. International database includes territorial data.

http://www.census.gov/data.html  and http://www.census.gov/population/international/data/idb/informationGateway.php

 

US Census Bureau: Disability*

Data on disability primarily through the American Community Survey (ACS) and the Survey of Income and Program Participation (SIPP)

http://www.census.gov/people/disability/

 

US Education Dashboard

Presents indicators in 4 areas that are critical to improving educational results and achieving the President's 2020 college attainment goal

http://dashboard.ed.gov/

 

US Office of Adolescent Health

National and State Adolescent Health Data 

http://www.hhs.gov/ash/oah/resources-and-publications/facts/index.html

 

Voc Rehab Core Data*

Key data and download tables on basic Vocational Rehabilitation (VR) programs for each state agency

https://explore.data.gov/Labor-Force-Employment-and-Earnings/Vocational-Rehabilitation-Programs-Core-Data/ujvb-c756

 

What Works Clearinghouse

IES reviews of research on education programs, products, practices and policies

http://ies.ed.gov/%20ncee/wwc/

 

Other:

  • Infants and Toddlers and other state early childhood data on diagnosis, demographics, and referrals
  • State Department of Aging data on disability and aging
  • State Department of Education - annual performance profile
  • State Department of Labor and Workforce Development for data and reports on your state's population, workforce, and its economy
  • US Department of Justice datasets: http://catalog.data.gov/organization/doj-gov