Skip to Content
  • In the News: NCI Data on Adults with Autism

    06/2017

    National Core Indicators (NCI) data features prominently in a new article in Disability Scoop, which shares findings from a recent study by the AJ Drexel Autism Institute. Drexel researchers used NCI data to assess service needs, use, and outcomes for 3,520 adults with autism who receive state-provided developmental disability services. Pointing to the relatively small proportions of the study sample who were engaged in paying jobs in the community (14%) and structured day activities (25%), the researchers highlight the importance of better understanding the experiences and needs of those on the spectrum as they transition to adulthood.

    (National Core Indicators is a collaborative effort between HSRI and the National Association of State Directors of Developmental Disabilities Services.)

    Image from Disability Scoop article: adult at home using the computer

    For more research on life experiences and outcomes of adults on the autism spectrum, using NCI data, check out this article published in Inclusion, written by HSRI staff and Ari Ne'eman of the Autistic Self Advocacy Network.

    Read More

  • NCI Releases 2015-16 At-A-Glance Report

    05/2017

    NCI’s latest At-A-Glance Report is now available! At-A-Glance is a shorter summary report that visually depicts the most interesting data collected across all NCI tools in a given year. This year’s report also includes two case studies that describe how a state and a regional center are using NCI results to drive improvement.

    Read More

  • NCI Data Brief: Significant Disparities in Outcomes and Quality of Life for Those Needing Support for Self-Injurious Behavior

    05/2017

    Self-injurious behavior can have serious negative effects on health, quality of life, and inclusion for people with intellectual and developmental disabilities. NCI staff looked at the data from the National Core Indicators Adult Consumer Survey 2015-2016 and found significant disparities in outcomes and quality of life for the 3,617 people in the sample who were identified as needing support to manage self-injurious behavior (SIB), compared to those who were identified as not needing such support. The latest NCI data brief details their findings and describes ways states can use the results to improve service delivery.

    In terms of prevalence, the proportion of people with SIB support needs ranged widely across states—from 12% to 45%—a possible indicator of differences in eligibility criteria for public supports or in definitions of SIB.

    In terms of characteristics and outcomes, those with SIB support needs were significantly more likely to have been diagnosed with a mood or anxiety disorder. And though 67% were identified as having behavior challenges, 44% of people with SIB support needs did not have a behavior plan in place. They were also significantly more likely to live in a group setting and were less likely to report that they like where they live, that they have friends beyond family and staff, and that they had input into major life decisions. They were also significantly more likely to prefer to communicate via gestures/body language or sign language or finger spelling.

    Graph showing respondents with SIB support needs have less input into life decisions.

    Among other policy recommendations, NCI staff point to the importance of functional assessments and analysis in improving outcomes for people with SIB support needs; these assessments can help identify the underlying causes and the consequences of the behavior and determine ways to replace it with a functionally related appropriate alternative. They also note the importance of employing evidence-based and person-centered practices, such as Positive Behavior Supports (PBS), to ameliorate the intensity or presence of SIB, and suggest that states that allow aversive interventions may want to re-examine their policies on these interventions to determine whether they’re aligned with desired quality of life outcomes.

    Read More

  • New! National Core Indicators Aging and Disability Adult Consumer Survey: 2015-2016 National Results

    05/2017

    HSRI and the National Association of States United for Aging and Disabilities (NASUAD) are pleased to announce the release of a new report, National Core Indicators Aging and Disability Adult Consumer Survey: 2015-2016 National Results. The report presents the findings of a consumer experience survey that assesses quality of life and outcomes for seniors and adults with physical disabilities who receive publicly funded long-term services and supports (LTSS).

    While states are the primary stewards of publicly funded LTSS, they have had few tools to measure the quality of these services and the outcomes of the people they serve. To address this need, NASUAD and HSRI worked with state Medicaid, Aging, and Disability Agencies to develop the National Core Indicators for Aging and Disabilities (NCI-AD). The NCI-AD survey is specifically designed to collect valid and reliable person-centered data. States that administer the survey were central to its design, and are committed to improving their LTSS systems. NCI-AD was implemented for the first time in 2015, and thirteen states participated in the data collection cycle (2015-16): Colorado, Delaware, Georgia, Indiana, Kansas, Maine, Minnesota, Mississippi, New Jersey, North Carolina, Ohio, Tennessee, and Texas. Together, they surveyed over 13,000 individuals receiving a variety of services.  The national report is designed to encapsulate the work and findings from the project’s first year; it provides a broad overview of the results across participating states and their LTSS programs.

    “These data give public managers in aging and disability systems the opportunity to hear the voices and experiences of the individuals they serve and to improve services based on their input,” said Val Bradley, president emerita of HSRI.

    View the full report here.

    Read More

  • Delaware Leadership Institute, Summer 2017 - Applications Now Being Accepted

    05/2017

    Applications for the University of Delaware’s National Leadership Institute on Developmental Disabilities - to be held July 16-21 - will be accepted through May 10. This week-long, intensive leadership development program is designed for current executive-level leaders and emerging leaders. Participants may work in areas of management or program leadership in organizations that provide, advocate for, or fund supports for people with intellectual/developmental disabilities and their families.

    The focus of the Leadership Institute is on assessing and strengthening leadership skills, setting organizational direction, and understanding the future of the intellectual/developmental disabilities field. Institute participants come away with demonstrated leadership ability and a firm grasp of the skills and values critical for quality, individualized supports.

    Participants will learn the skills needed to...

    Read More

  • Sharing Research on the Effectiveness of Peer Respites

    04/2017

    HSRI Research Associate Bevin Croft is one of the presenters featured in “Peer-run Respites: Effective Alternatives to Hospitals," a webinar presented by the National Coalition for Mental Health Recovery. You can watch the recorded version here: https://nasmhpd.adobeconnect.com/p1q3luhdeff/. Leaders of peer respites from around the country describe their programs, and Bevin shares some of the latest research on the effectiveness of these models.

    A team at HSRI conducted an evaluation of a peer respite in Santa Cruz, California. Their research showed that, compared with similar residents in the community who were using mental health services, peer respite guests were 70% less likely to use inpatient or emergency services. They also found that respite days were associated with significantly fewer inpatient and emergency service hours.

    Read More

  • Examining Outcomes for People with Autism

    03/2017

    Are people with autism benefiting from disability reforms and supports to the same extent as people with other developmental disabilities? HSRI staff, along with partner Ari Ne’eman, examined the NCI Adult Consumer Survey data to find out. They discovered that, compared with respondents without an ASD diagnosis, respondents with ASD with were less likely to have paid jobs in the community, less likely to have had input into major life decisions, and less likely to be included in their communities.

    Check out their newly released article in the journal Inclusion, featuring additional findings and some suggestions for future research and policy. Congratulations to the authors – HSRI’s Dorothy Hiersteiner, Valerie Bradley, Julie Bershadsky, and Alixe Bonardi, and Ari Ne’eman of the Autistic Self Advocacy Network!

    Read More

  • HSRI-Developed Tool Rates Highly in Consumer Reports Investigation

    02/2017

    This fall, Consumer Reports released the results of an investigation into the quality and usability of cost-estimator tools from New York health insurance companies and related resources. As part of the study, CR also examined eight standalone websites that deliver healthcare cost and quality information to consumers, including CompareMaine, a state-specific tool developed by HSRI’s population health team. Using a combination of consumer user testing and objective scoring criteria, CR rated the standalone websites on ease of use, functionality, content, and scope and reliability. CompareMaine ranked second with 65 points, just one point behind a website that provides national data! (Scores among the eight sites ranged from 22 to 66 points.)

    CompareMaine ranked higher than the other tools in Ease of Use—a particularly important category given that consumer testers rated user-friendliness as the most important factor for these tools. CompareMaine also received CR’s highest rating for Scope and Reliability.

    Notably, consumers also expressed a preference for cost and quality information to be presented together rather than on different parts of a website—and CompareMaine is one of the few sites that meets this preference.

    CR’s recommendations for New York, as outlined in an associated Issue Brief, included the recommendation that the state should “explore ways to provide direct consumer access to provider-level price/value information (for both insured and uninsured patients) through a single comprehensive price transparency website, using data from the All-Payer Database (APD) and other sources, similar to what New Hampshire and Maine do.”

    “We are excited to have CompareMaine included in the Consumer Reports review,” said Leanne Candura, director of HSRI’s population health team. “Consumers played a big role in its development, and we worked hard—with them and with our client, the Maine Health Data Organization, and our project partners—to create an easy-to-use tool. We’ve been presenting at national conferences on best practices for conveying cost and quality information to consumers, and we’re working with several states in this regard, helping transform their health datasets into effective decision-support tools.”

    CompareMaine Flyer image

    HSRI led the development of CompareMaine as part of a contract with the Maine Health Data Organization, in partnership with NORC at the University of Chicago and web designer Wowza. Grant funds from the Centers for Medicare & Medicaid Services made the website possible. 

    Read More

  • Alixe Bonardi Named Fellow of the American Association on Intellectual and Developmental Disabilities

    01/2017

    Alixe Bonardi, senior leader of HSRI’s intellectual and developmental disabilities services research team, has been named a fellow of the American Association on Intellectual and Developmental Disabilities (AAIDD).

    Bonardi has been an employee of HSRI for two years, and she leads HSRI’s National Core Indicators efforts, a 20-year partnership with the National Association of State Directors of Developmental Disabilities Services to assess outcomes for people with intellectual and developmental disabilities.  She is also a clinical assistant professor at the University of Massachusetts Medical School and a faculty member in the Leadership Education in Neurodevelopmental Disability (LEND) program. Alixe has co-authored several publications, with a current area of concentration in health equity and evaluation of the quality of life for individuals with disabilities.

    The honor of Fellow of the Association of the AAIDD is presented after careful review by a committee of association leaders. Individuals are nominated and considered when they are judged to have made a meritorious contribution to the field of intellectual disability and after they have been an active, participating member of AAIDD for at least seven continuous years.

    Alixe Bonardi of HSRI

    Read More

  • HSRI Unveils New Senior Leadership Team

    01/2017

    The Human Services Research Institute announced today the new senior leadership team that has been selected to lead HSRI’s strategic direction. The new team balances continuity and forward-thinking, promoting the next generation of HSRI leaders from within the organization and providing a platform for continuing HSRI’s mission of assisting health and human services agencies to improve the quality and availability of programs and services that help people live independent, healthy, fulfilling lives.

    “The opportunity that HSRI has to guide clients through exciting advances in health and human services—including integrated health, system outcome tools, self-direction, advanced resource allocation models, and improved health data analytics—is incredible. We have four decades of experience helping agencies and service systems make data-driven decisions regarding the best ways to deliver services and supports. And with the leadership team I’m announcing today, I’m confident that HSRI is on the path for another 40 years of innovation and influence,” said David Hughes, who was named incoming HSRI president in October 2015 and officially stepped into the role on January 1, 2017.

    The six leaders who will sit on HSRI’s new senior leadership team are:

    Read More