• NCI Team Members included in AAIDD National Historic Recognition Project, 2000-2010

    Apr 9th, 2020


    CONGRATULATIONS to NCI Director for HSRI Alixe Bonardi and HSRI President Emerita (and NCI co-founder) Val Bradley on their inclusion in the AAIDD National Historic Recognition Project 2000-2020

  • NCI Data Highlight: What do NCI Data Tell Us About Access to Cell/Smartphones Among People with IDD

    Apr 1st, 2020

    During the COVID 19 pandemic, much like people all over the US, people with intellectual and developmental disabilities (IDD) will limit their contact with others,.  However, for people with IDD, the challenges posed by such isolation may be much greater than those encountered by the general population.  In the 2018-2019 In-Person Survey data collection cycle, 56% of respondents said they had a cell or smartphone (states ranged from 70% with phones to 49% with phones); of those without a phone, 44% of respondents said that they wanted one.  

    See NCI's newest Data Highlight here 



  • COVID-19 and NCI IPS surveying: Why remote surveying is not yet supported

    Apr 1st, 2020

    As states are rolling out social distancing measures to prevent the rapid spread of the COVID-19 virus, National Core Indicators® (NCI®) states have paused face-to-face surveying of any kind, including In-Person Survey (IPS) surveying. 

    Several states have asked about using video-conference technology to complete surveys and gather the remaining responses to complete the survey cycle. Unfortunately, this is not yet an option for the NCI In-Person Survey. The NCI National Team is in the process of pilot testing remote surveying for its practicality and validity when surveying people with intellectual/developmental disabilities. This pilot testing will provide the crucial information necessary to determine if and how remote surveying would affect the validity and comparability of the data

    We think it’s important that our partners understand the reasons why NCI does not currently support phone or videoconference surveys.

    NCI is unique and invaluable partially because of the direct contact NCI surveyors make with people with IDD to assess their subjective perspectives on their life experience and outcomes. The in-person conversations facilitated by NCI surveyors provide opportunities to flexibly accommodate and listen to people’s verbal and non-verbal communication. This direct contact is also intentional, to demonstrate respect and build trust between the person being surveyed and the surveyor. Importantly, we want to ensure that remote surveying helps expand our ability to connect with people and does not hinder their ability to respond to the survey, thus limiting the sample and compromising representativeness.   

    As previously mentioned, we are currently in the process of testing video-conference surveys (remote surveys) in Alaska. To prepare for this testing, the NCI National Team has:

    • Researched protocols currently in use for CMS approved telehealth administration
    • Researched videoconference technology that is HIPAA secure
    • Tested various hardware and software requirements so as to assure a stable, well connected and uninterrupted conversation between the surveyor and the person answering the questions.
    • Researched, developed and tested survey administration protocols
    • Developed training procedures for surveyors conducting remote surveys
    • Worked closely with our colleagues in AK to observe several surveys conducted remotely

    The results of our initial phases of remote survey testing are promising. Some considerations that we are still working to address are:

    • Finding the best way to communicate particularly when the surveyor and/or participant experience challenges in understanding one another (for example, if a translator is needed, or if the person being surveyed does not communicate verbally).
    • Ensuring that responses from people being surveyed are not accidentally or otherwise influenced by someone in the same room.
    • Ensuring adequate privacy and handling situations when additional people may walk in on the survey, taking into consideration that computers cannot always be moved to quieter areas.
    • Protocols around the use of proxy
    • Surveyor and person being surveyed must have access to a secure, HIPAA compliant video conference platform
    • Stable internet and access to needed equipment (e.g., webcam, microphone) and technical assistance
    • Ability for participants to connect and for surveyors to be able to support “troubleshooting” issues

    In addition, we have not yet examined the data gathered through remote surveying to assess how data collected in this mode may differ from those collected face-to-face. We will examine the resulting data to see whether people who respond using remote surveying are different in any way to those who participate in the traditional face-to-face survey. In addition, we will examine how remote surveying may affect the responses provided.  

    State DD systems’ staff rely on NCI data to report valid, reliable information on the performance of their service system that can be tracked year to year. For many states, the current survey year is being paused with only a partial sample, and we anticipate that the COVID-19 disruptions may impact responses in any remaining data collection. Because of the disruptions in data collection this year, we are developing contingency plans for reporting of available data, and, if necessary, considering any confounding effects of the virus and isolation.   A prioritized goal for NCI is to assure that we minimize the impact of data collection disruptions on the final 19-20 data set. 

    We will keep you informed and will be reaching out to state agencies for their input and suggestions.  In the meantime, know that we are committed to the sustainability of this important resource on the lives of people with IDD.

    Stay tuned and stay healthy.