Who We Are
National Core Indicators – Intellectual and Developmental Disabilities is a collaboration that includes the National Association of State Directors of Developmental Disabilities, the Human Services Research Institute and state intellectual and developmental (IDD) agencies.
National Association of State Directors of Developmental Disabilities (NASDDDS)
The National Association of State Directors of Developmental Disabilities Services (NASDDDS) represents the nation’s agencies in 50 states, Puerto Rico, and the District of Columbia providing services to children and adults with intellectual and developmental disabilities and their families. NASDDDS promotes visionary leadership, systems innovation, and the development of national policies that support home and community-based services for individuals with disabilities and their families.
Human Services Research Institute (HSRI)
Since 1976, HSRI has been helping to craft community-based, person-driven service systems. We’re passionate about supporting leaders and policymakers, and the people they serve, because we share the same goal: to see all people living healthy, fulfilling lives as empowered, respected members of society.
Our team of dedicated professionals provides research, support and guidance to clients looking to develop more efficient and responsive service systems. Combining rigorous quantitative research with community-based participatory research, we strive for more-impactful results and more specific roadmaps to improvement.
We work across all sectors and program areas in health and human services, addressing the needs of people with intellectual and developmental disabilities; people experiencing behavioral health disorders; children, youth and families; seniors and people with physical disabilities; people experiencing housing instability or homelessness; and states and communities looking to promote population health.
What NCI-IDD is About
The primary aim of this collaboration is to collect and maintain valid and reliable data about the performance of public IDD systems and the outcomes experienced by participants in the system. NCI states and project partners are committed to generating data that can be used to improve long-term care policy and practice at the state and national level, and to contribute to knowledge in the IDD field.
From the beginning of NCI-IDD, we have been committed to transparency and to making survey results public. This makes it possible to compare state results with national norms and to assess the strengths and weaknesses of the state IDD system. To that end, this website provides public access to NCI-IDD data and current information about how the results are being used at the state and national levels to support policy, research, and advocacy efforts.
We and our member/partner organizations have worked over more the two decades to go beyond just publishing the state and national results in order to assist public managers to identify trends, to develop tools to use the data for quality improvement, and to commit to ensuring that the data collection protocols reflect the most current issues and concerns in the IDD field. Tools have included the development of data briefs on specific areas of interest such as employment, dual diagnosis, self-directed services, and autism spectrum disorders. To inform the field, the results of analyses of the multi-state dataset have been published in academic research journals and presented at conferences.
We invite all of those committed to the well-being of people with IDD and their families to use the NCI-IDD data to bring about person centered change. Success for us is to see these data as leverage for continual progress.
- People with intellectual and developmental disabilities are the most important people to hear from regarding the performance of public services and supports for IDD
- NCI-IDD data should be actionable so it can influence federal and state policies and practices
- NCI-IDD data should contribute to knowledge and research in the IDD field; NCI-IDD should collaborate with researchers and publish findings
- NCI-IDD results should be available publicly, allow for comparisons among states, and be available in formats that are accessible to all stakeholders including people with IDD
- NCI-IDD measures should focus on aspirational goals, not just the status quo
- NCI-IDD data should be used for quality improvement, not to assess and reward compliance
- NCI-IDD surveys should be reviewed periodically to make sure they stay aligned with the collective vision of the IDD field and relevant to the needs of public IDD managers
- NCI-IDD data should inform NASDDDS strategic planning and priority setting
- NCI-IDD protocols, data collection, and data analysis should be based on the best available science and standards for measuring people’s opinions and behaviors (aka robust psychometric standards)
- NCI-IDD survey content and processes should be reviewed to make sure the data can be used to advance equity of opportunity
Our In-Person Survey Standards
- No individual participant is preemptively deemed unable to participate
- The person with IDD is always included in the survey and participates as much as they are able
- The in-person survey process and content are continually reviewed to make sure that the maximum number of people with IDD can respond no matter what their level of disability
- Surveyors respect the preferences of the people with IDD who are participating in the survey, including with respect to how and where they participate
- The survey is designed to ensure that there are no questions that could potentially make someone feel anxious, uncomfortable, or sad
- The survey questions are based on quality-of-life domains that reflect the aspirations of people with IDD and as well as the field of IDD
- Survey participants are guaranteed that their responses are confidential
We believe people with intellectual and developmental disabilities are the most important people to hear from regarding the performance of public services and supports for IDD