National Core Indicators

The National Core Indicators® – Intellectual and Developmental Disabilities (NCI-IDD) program is how state developmental disability agencies find out how well they are doing. The state asks people with disabilities and their families what they think about the services they receive. This helps make services better. The program is run by two groups: the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI). In 2020-21, 48 states and the District of Columbia took part in NCI-IDD. Some states do not do the survey every year. Oregon Office of Developmental Disabilities Services (ODDS) has hired us to survey in Oregon.

Information collected drives service improvement by helping to:

  • Identify gaps in service
  • Highlight successes
  • Compare to other states
  • Track system performance over time
  • Give direct input from advocates and families

Interview participants are randomly selected by the state of Oregon and invited to take part in the survey. If you or a care provider is contacted about the survey, it is a good opportunity to provide your input on how well developmental disability services are working in our communities.

Please share our data briefs and about the importance of quality developmental disability services with others.

The Oregon Office of Developmental Disabilities Services contracts the University Center for Excellence in Developmental Disabilities at OHSU to collect data for the In-Person Survey and Child Family Survey for the state of Oregon. 

On a national scale, 48 other states, the District of Columbia, and 21 sub-state entities participate in NCI. The project is supported by the Human Services Research Institute and the National Association of State Directors of Developmental Disabilities Services

Who to contact

Kira Norton, M.P.H. - Project Coordinator
and
Rhonda Eppelsheimer, M.S.W., L.C.S.W. - Principal Investigator

Email ucedd@ohsu.edu
 

More about the survey process

Meet the 2024 Interviewers

Kira Norton, M.P.H.

Kira Norton, M.P.H.

Kira Norton, M.P.H., manages the National Core Indicators project and is a research assistant for the UCEDD. Norton works on other projects including the Personal Responsibility Education Program. She also assists with data cleaning and management, survey development, and community outreach.

Rachel Benson, M.S.W.

Rachel Benson, M.S.W.

Rachel Benson, M.S.W., is a research assistant for the UCEDD. Rachel works on the National Core Indicators project and the RRTC Prevalence Study. Her interests include systems evaluation/improvement, mental health, and addiction.

Blair Buder, DPT, MBA

Blair Buder, D.P.T., M.B.A.

Blair Buder, D.P.T., M.B.A. is a survey interviewer for the National Core Indicators project. She is also a physical therapist and a doctoral student in public health focusing on employment policy for people with intellectual and developmental disabilities.

Corey Coloma

Corey C.

Corey is a research assistant for the UCEDD. Coloma has worked on various projects including the National Core Indicators project.

Jennifer Kotzin, B.S., B.A.

Jennifer Kotzin, B.S., B.A.

Jennifer Kotzin, B.S., B.A., is a research assistant for the UCEDD. Kotzin works on the National Core Indicators project and is also the research assistant for the Spina Bifida Registry project through the Institute on Development and Disability at OHSU. Her interests lie in mental health support, specifically in depression, hopelessness, and suicide prevention.

Chelsea McNary

Chelsea McNary

Chelsea McNary is a survey interviewer for the National Core Indicators project. She is also a master’s student in Clinical Mental Health Counseling and works at a low-barrier homeless shelter.

Amy Murphy, M.P.H.

Amy Murphy, M.P.H.

Amy Murphy, M.P.H., is a survey interviewer for the National Core Indicators project and the RRTC Prevalence Study. She also leads data entry for the NCI Child Family Survey.

Anne Niven, M.Div.

Anne Niven, M.Div.

Anne Newkirk Niven, M.Div., is a research assistant and interviewer for the UCEDD. Niven works on the National Core Indicators project, and the RRTC Prevalence study.

Surveys we use in Oregon

Summary

Intellectual and Developmental Disabilities (NCI-IDD) program is a voluntary effort by state developmental disability agencies to track their performance using a standardized set of consumer and family/guardian surveys with nationally validated measures. The effort is coordinated by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI). In 2020-21 a total of 48 states, the District of Columbia and 22 sub-state entities participated in NCI-IDD. Not all participating states do all surveys every year.

Method

Interview participants are randomly selected by the state of Oregon and invited to take part in the survey. If you or a care provider is contacted about the survey, it is a good opportunity to provide your input on how well developmental disability services are working in our communities.

Highlights

  • Satisfaction with services: Oregon only has a 91% satisfaction rating with their Services compared to the national average of 93%.
Services and supports help a person live a good life. Bar Chart: Oregon 91% N=247 NCI-IDD 93% N=11593
  • Community Outings: Only 55% of people in Oregon go out into the community as often as they want to while the national average is 72% of people.
Able to go out and do the things they like to do in the community as often as they want. Bar Chart: Oregon 55% N=229 NCI-IDD 72% N=10280
  • Community Employment: 52% of people in Oregon said they have community employment as a goal in their service plan, and the national average is 27%.
Has community employment as a goal in service plan. Bar Chart: Oregon 52% N=419 NCI-IDD 27% N=9947

Summary

The NCI-IDD Child Family Survey is used to gather data on family outcomes. It is mailed to families who have a child who lives with the respondent and receives at least one service in addition to case management from the state DD agency. The survey collects demographic information on both the child receiving services (‘child’) as well as the person who fills out the survey (the ‘respondent’) and information on services and supports received. The survey is continually refined and tested to ensure it is valid and reliable.

Method

OHSU assists ODDS with mailing out surveys to participants. Some of the people who participate fill out the survey directly online and others will fill in a paper copy and mail the survey back in for OHSU staff to enter in the online record.

Highlights

Table 5a. Child's Health Conditions 

All data are reported by the respondent based on their understanding of their child's demographics, diagnoses and personal characteristics. Categories are not mutually exclusive, therefore N is not shown.

State Cardiovascular Disease Diabetes Cancer High Blood Pressure High Cholesterol
Oregon 7% 3% 3% 4% 8%
Weighted NCI-IDD Average 13% 4% 2% 6% 5%
Dental Care Access
Can your child go to the dentist when needed? Bar Chart - Always: Oregon 59% Weighted NCI-IDD Average 71% Usually: Oregon 26% Weighted NCI-IDD Average 20% Sometimes: Oregon 9% Weighted NCI-IDD Average 5% Seldom or Never: Oregon 6% Weighted NCI-IDD Average 4% Oregon n=654 Weighted NCI-IDD Average n=4504
Data from the Child Family Survey (CFS) 2020-21 State Report Oregon (OR) Report

Bar Chart: Can your child go to the dentist when needed? Always: 59% of people in Oregon responded "Always", while the Weighted NCI-IDD Average was 71%. Usually: 26% of people in Oregon responded "Usually", while the Weighted NCI-IDD Average was 20%. Sometimes: 9% of people in Oregon responded "Sometimes", while the Weighted NCI-IDD Average was 5%. Seldom or Never: 6% of people in Oregon responded "Seldom or Never", while the Weighted NCI-IDD Average was 4%. Oregon n=654; Weighted NCI-IDD Average n=4504.

Satisfaction with Services and Supports
Overall, are you satisfied with the services and supports your family currently receives? Bar Chart - Always: Oregon 27% Weighted NCI-IDD Average 36% Usually: Oregon 55% Weighted NCI-IDD Average 43% Sometimes: Oregon 15% Weighted NCI-IDD Average 17% Seldom or Never: Oregon 4% Weighted NCI-IDD Average 5% Oregon n=644 Weighted NCI-IDD Average n=4492
Data from the Child Family Survey (CFS) 2020-21 State Report Oregon (OR) Report

Bar Chart: Overall, are you satisfied with the services and supports your family currently receives? Always: 27% of people in Oregon responded "Always", while the Weighted NCI-IDD Average was 36%. Usually: 55% of people in Oregon responded "Usually", while the Weighted NCI-IDD Average was 43%. Sometimes: 15% of people in Oregon responded "Sometimes", while the Weighted NCI-IDD Average was 17%. Seldom or Never: 4% of people in Oregon responded "Seldom or Never", while the Weighted NCI-IDD Average was 5%. Oregon n=644; Weighted NCI-IDD Average n=4492.

Summary

The annual NCI-IDD State of the Workforce Survey gets information on the Direct Support Professional (DSP) workforce providing direct supports to adults (age 18 and over) with intellectual and developmental disabilities (IDD). The goal of the survey and the results help states learn about workforce challenges, find areas for further investigation, benchmark their workforce data, measure improvements made through policy or programmatic changes, and compare their state data to those of other states and the NCI-IDD average. The UCEDD works with the Oregon Office of Developmental Disabilities Services to look at NCI-IDD State of the Workforce Survey data.