Publications

The following NCI related articles have been published in books, leading journal, magazines, and other media sources:

  • Quality monitoring of intellectual and developmental disabilities systems in the US: Assessing the utility and applicability of selected National Core Indicators to national and state priorities

    This article provides historical context on the evolution of performance measures for system improvement, examines the perspectives and insights of state public managers on the use and utility of NQF-endorsed outcome measures from the NCI®-IDD In-Person Survey (IPS) for quality improvement, and discusses the necessity of ensuring that outcome measures align with public policy goals.

    Read article here. 

  • Community supports in crisis: No staff, no services.

    DSPs are the backbone and beating heart of the system of supports for people with IDD. They are directly responsible for assisting people with IDD to live and fully participate in their communities. They perform varied and complex tasks and bear a high level of responsibility. However, attracting and retaining skilled DSPs has become a daily challenge to service provider agencies around the country. At the same time, the challenges faced by DSPs themselves are increasing, as more and more people with complex disabilities live and work in the communities and neighborhoods of their choosing. With the onset of the COVID-19 pandemic, the complexity and burden of the DSP has only increased. 


    The purpose of this paper is to —
    • Sound the alarm about the nature and scope of the workforce crisis in the IDD service system,
    • Clarify the unique characteristics and responsibilities of this workforce, compared to caregivers in other LTSS sectors,
    • Provide an overview of the depth of the crisis in the workforce and the impact on people with IDD,
    • Identify state and provider initiatives that have shown success in addressing the crisis, and
    • Suggest urgent policy changes to enhance the stability of the workforce.
     

    ICI, HSRI, & NASDDDS. (2022). Community supports in crisis: No staff, no services. Minneapolis, MN: University of Minnesota, Institute on Community Integration.

  • What Do NCI Data Tell Us About the Characterisics and Outcomes of Older Adults with IDD?

    Bradley, Valerie J.; Hiersteiner, Dorothy; Li, Henan; Bonardi, Alexandra; and Vegas, Laura (2020) "What Do NCI Data Tell Us About the Characterisics and Outcomes of Older Adults with IDD?," Developmental Disabilities Network Journal: Vol. 1 : Iss. 1 , Article 6. Available at: https://digitalcommons.usu.edu/ddnj/vol1/iss1/6

  • Personal characteristics and outcomes of individuals with developmental disabilities who need support for self‐injurious behaviour

    Bradley, V., Hiersteiner, D., Rotholz, D., Maloney, J., Li, H., Bonardi, A., Bershadsky, J. (2018) Personal characteristics and outcomes of individuals with developmental disabilities who need support for self‐injurious behaviour.  Journal of Intellectual Disability Research https://doi.org/10.1111/jir.12518 

  • Putting the Research in Context: The Life Experience and Outcomes of Adults on the Autism Spectrum Receiving Services in 29 States

    Hiersteiner, D., Bradley, V., Ne'eman, A., Bershadsky, J. & Bonardi, A. (2017) Putting the research in context: The life experience and outcomes of adults on the autism spectrum. Inclusion 5(1) 45-59 http://www.aaiddjournals.org/doi/abs/10.1352/2326-6988-5.1.45 

  • National Core Indicators©: Data on the current state of employment of adults with IDD and suggestions for policy development

    Butterworth, J., Hiersteiner, D., Engler, J., Bershadsky, J. & Bradley, V.. (2015) National Core Indicators©: Data on the current state of employment of adults with IDD and suggestions for policy development. Journal of Vocational Rehabilitation 42 209-220 DOI:10.3233/JVR-150741 

  • Race/Ethnicity and the Use of Preventive Health Care Among Adults With Intellectual and Developmental Disabilities

    Bershadsky, J., Hiersteiner, D., Fay, M.L., Bradley, V. (2014) Race/Ethnicity and the Use of Preventive Health Care Among Adults with Intellectual and Developmental Disabilities. Medical Care 52(10)Suppl 3. S25-S31

  • Demographic characteristics, health conditions, and residential service use in adults with Down syndrome in twenty-five U.S. states

    Stancliffe, R. J., Lakin, K. C., Larson, S. A., Engler, J., Taub, S., Fortune, J., & Bershadsky, J. (2012). Demographic characteristics, health conditions, and residential service use in adults with Down syndrome in twenty-five U.S. states. Intellectual and Developmental Disabilities, 50(2), 92–108. DOI: 10.1352/1934-9556-50.2.92

  • Place of residence and preventive health care for developmental disabilities services recipients in twenty states.

    Bershadsky, J., Taub, S., Bradley, V., Engler, J., Moseley, C., Lakin, K. C., Stancliffe, R. J., Larson, S., Ticha , R. & Bailey, C. (2012). Place of residence and preventive health care for developmental disabilities services recipients in twenty states. Public Health Reports, 127, 475-485.

  • Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states

    Hewitt, A. S., Stancliffe, R. J., Johnson Sirek, A., Hall-Lande, J., Taub, S., Engler, J., Bershadsky, J., Fortune, J., & Moseley, C. (2011). Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states. Research in Autism Spectrum Disorders, 6(2), 741-751.

  • Choice of living arrangements

    Stancliffe, R. J., Lakin, K. C., Larson, S. A., Engler, J., Taub, S., & Fortune, J. (2010, EPublication date, October 3, 2010). Choice of living arrangements. Journal of Intellectual Disability Research, 1-17. DOI: 10.1111/j.1365-2788.2010.01336.x

  • Individuals with intellectual disabilities and augmentative and alternative communication: Analysis of survey data on uptake of aided AAC, and loneliness experiences.

    Stancliffe, R. J., Larson, S. A., Auerbach, K., Engler, J., Taub, S. & Lakin, K. C. (2010). Individuals with intellectual disabilities and augmentative and alternative communication: Analysis of survey data on uptake of aided AAC, and loneliness experiences. Augmentative and Alternative Communication, 26(2), 87-96. DOI: 10.3109/07434618.2010.481564

  • Choice of where and with whom to live (Abstract)

    Stancliffe, R. J., Lakin, K.C., Larson, S., Engler, J., Taub, S., Fortune, J. (2010). Choice of where and with whom to live (Abstract). Journal of Applied Research in Intellectual Disabilities, 23(5), 486.

  • Using consumer survey data in the USA. (Abstract)

    Bradley, V., Taub, S., & Bershadsky, J. (2010). Using consumer survey data in the USA. (Abstract).  Journal of Applied Research in Developmental Disabilities. 23 (5), 469.

  • Adults with Down syndrome who use US developmental disabilities service systems

    Stancliffe, R. J., Lakin, K.C., Larson, S., Engler, J., Taub, S., Fortune, J., & Ticha, R. (2010). Adults with Down syndrome who use US developmental disabilities service systems. Journal of Applied Research in Intellectual Disabilities, 23(5), 482.

  • Satisfaction and sense of well-being among Medicaid ICF/MR and HCBS recipients in six states

    Stancliffe, R. J., Lakin, K. C., Taub, S., Chiri, G., & Byun, S. (2009). Satisfaction and sense of well-being among Medicaid ICF/MR and HCBS recipients in six states. Intellectual and Developmental Disabilities (formerly Mental Retardation), 47(2), 63-83. doi: 10.1352/1934-9556-47.2.63

  • Satisfaction and Sense of Well Being among Medicaid ICF/MR and HCBS Recipients in Six States

    Stancliffe, R. J., Lakin, K. C., Taub, S., Chiri, G., & Byun, S. (2009). Satisfaction and Sense of Well Being among Medicaid ICF/MR and HCBS Recipients in Six States. Intellectual and Developmental Disabilities, 47(2), 63-83.

  • Loneliness, friendship and augmentative and alternative communication (AAC) (Abstract)

    Stancliffe, R. J., Lakin, K. C., & Taub, S. (2009). Loneliness, friendship and augmentative and alternative communication (AAC) (Abstract). Journal of Policy and Practice in Intellectual Disabilities, 6(2), 149-150.

  • Factors associated with expenditures for Medicaid home and community based services (HCBS) and intermediate care facilities for persons with mental retardation (ICF/MR) services for persons with intellectual and developmental disabilities

    Lakin, K. C., Doljanac, R., Byun, S., Stancliffe, R. J., Taub, S., & Chiri, G. (2008). Factors associated with expenditures for Medicaid home and community based services (HCBS) and intermediate care facilities for persons with mental retardation (ICF/MR) services for persons with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 46(3), 200-214.

  • Choice making among Medicaid Home and Community-Based Services (HCBS) and ICF/MR recipients in six states

    Lakin, K. C., Doljanac, R., Byun, S., Stancliffe, R. J., Taub, S., & Chiri, G. (2008). Choice making among Medicaid Home and Community-Based Services (HCBS) and ICF/MR recipients in six states. American Journal on Mental Retardation, 113 (5), 325-342.

  • Living arrangements and well being (Abstract)

    Stancliffe, R. J., Lakin, K. C., Taub, S., Chiri, G., & Byun, S. (2008). Living arrangements and well being (Abstract). Journal of Intellectual Disability Research, 52, 790.

  • Perspectives: National Core Indicators: Ten Years of Collaborative Performance Measurement

    Bradley, V.J. & Moseley, C. (2007). Perspectives: National Core Indicators: Ten Years of Collaborative Performance Measurement. Intellectual and Developmental Disabilities, 45, 5: 354-358.