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Research

GOAL: Conduct federally and independently-funded research studies and program evaluations to ensure dissemination of evidence-based information and interventions and to gain new knowledge related to best supporting individuals with IDD from diverse backgrounds.

R1: Conduct research and evaluation to enhance the inclusive educational opportunities for people with intellectual and developmental disabilities

R1a: Conclude NIH R01 examining 10-year outcomes of 153 children enrolled in early intensive behavioral intervention, as well as predictors of long-term cognitive, academic, and adaptive outcomes. Data will enhance our understanding of the efficacy of early intervention (EI) services and therefore has the potential to affect NYS policies related to EI service access (approx. 20,000 children in Western New York).

  • Year 1:  Completion of data collection and data cleaning
  • Years 2-5: Data analysis, interpretation, and publication submission. Dissemination of findings through national conferences and community meetings.

*Conducted in shared leadership with Institute for IDD faculty

R1b: Continue HRSA/MCHB-funded Autism Intervention Research Network on Behavioral Health (AIR-B), currently in the fourth year of a 5-year cycle. This community-based participatory model evaluates community interventions to increase service access and school transitions for 240 children with ASD. If the programs are successful, they may be disseminated to over 30 school districts in Western New York, in addition to national dissemination through our California and Pennsylvania State collaborators. *Includes community research partnership that contributes to planning, implementation, and dissemination

  • Year 1:  Data analysis/interpretation and publication submission
  • Years 2-5: Development, submission, and implementation of new network cycle (to be submitted in 2020)

R1c: Initiate new research study: NIH R01 under review to evaluate relative benefits of adult versus child-led interventions to increase communication in 140 children with ASD, as well as learning trajectories and identification of ideal treatment intensity for those who do not respond quickly.

  • Year 1:  Study startup and intervention refinement
  • Years 2-5: Data collection, data analysis, and dissemination of results

R1d: Initiate new research study: Institute for Education Sciences award under review to fund expansion of a network-wide, modular intervention for supporting 120 students with ASD in public school classrooms and their teachers (n=60), in an effort to increase time in general education. This project has the capacity to be disseminated within up to 10 regional school districts, in addition to districts in our partner regions (i.e., South Florida and Boston). *Intervention developed via community-based participatory model, with feedback from community stakeholders

  • Year 1:  Study startup and development of research partnerships
  • Years 2-5: Recruitment, data collection, data analysis, and dissemination of results

R1e: Conduct new 5-year grant from Department of Defense (awarded 2018) to compare standard early intervention strategies with a modular intervention focused on social-communication skills in 130 young children with ASD, aged 18 months-5 years. Results have the potential to significantly affect state and federal policy recommendations for early intervention and applied behavior analysis, as this project will provide important information on both intervention type and ideal intervention dose.

  • Year 1:  Study startup and intervention development
  • Years 2-5: Data collection, data analysis, and dissemination of results. Develop and disseminate associated recommendations and advocate for policy shifts, if indicated by the findings

R1f: Conduct new NIH-funded grant (awarded 2018) evaluating the use of pragmatic language in 25 adults with ASD and 25 without ASD, which has the potential to inform the creation of an automated software tool for analyzing everyday spoken language, and to drive autism-specific language interventions.

  • Year 1:  Study startup and data collection
  • Years 2-5: Data collection, data analysis, and dissemination of results

R2: Conduct research and evaluation to enhance the integrated, competitive employment of people with intellectual and developmental disabilities

R2a: Support Project SEARCH data collection and reporting systems across NYS. Analyze longitudinal outcomes of Project SEARCH in partnership with NYS NYESS, while simultaneously supporting analysis of data collected through Cincinnati Children’s Hospital’s new database. In addition, explore a new study of family expectations and involvement and the association to outcomes in Project SEARCH.

  • Year 1:  Conduct annual Project SEARCH evaluation
  • Years 2-5: Continue annual evaluations and develop 2-3 community reports

R2b: Systematically evaluate new and ongoing pre-vocational programs (e.g., Job Club) implemented for individuals with IDD in two classrooms within our largest school district. Measure outcomes including: employment self-efficacy, employment knowledge, job readiness, family contact with community resources, parent employment expectations.

*To be conducted in collaboration with disability self-advocates and leaders

  • Year 1:  Finalize and pilot outcome measures and evaluation metrics
  • Years 2-5: Conduct annual evaluations on Employment Discovery Network Activities, including annual evaluations that are cohort dependent

R2c: Conduct systematic evaluations on trainings provided to support businesses in the recruitment, hiring, and retention of individuals with disabilities.

*To be conducted in collaboration with disability self-advocates

  • Year 1:  Conduct evaluation on two employment trainings
  • Years 2-5: Conduct annual evaluations on 3-4 trainings

R2d: Conduct needs assessment with at least 50 higher education educators/administrators, transition-age adults with IDD, and family members to identify needs, barriers, and facilitators to successful participation in post-secondary educational opportunities.

  • Year 1:  Conduct needs assessment
  •  Years 2-5: Prepare publication; use findings to inform development of an ECHO on inclusion in secondary education environments

R3: Conduct at least 5 research studies/evaluations per year to enhance the physical and behavioral health of people with IDD throughout the lifespan

 

R3a: Continue Western NY study geo-mapping of sources of primary health and oral health care for people with IDD across lifespan. Extracted dataset for analysis of all individuals with IDD across the lifespan served by University of Rochester Medical Center; analyzing data for preventive health care markers, disparities in health care delivery, and 30-day readmission data.

R3b: Execute planned expansion for the health literacy program for adolescents with ASD. The pilot is completed (publications under review), and a new grant submission is under review.

*Intervention developed with input from individuals with ASD

  •  Year 1:  Secure funding and study startup
  • Years 2-5: Recruitment, data collection, analysis, and publication

R3c: Complete ongoing, extramurally-funded research study on obesity prevalence in ASD and publish at least one peer-reviewed article in 2019

  • Year 1:  Publish at least one peer-reviewed article
  • Years 2-5: Develop study-based recommendations and disseminate within the community

R3d: Secure federal funding to support medical provider training for OB-GYN offices on providing appropriate gynecological and prenatal care for adult women with disabilities; research outcomes will include evaluation of training impact on provider self-efficacy, clinical comfort, and disability knowledge. 

*Need identified via self-advocates; to be conducted in partnership with self- and family advocates

  • Year 1:  Develop and submit grant application to NIH/HRSA
  • Years 2-5: Study recruitment, data collection, analysis, and publication

R4: Evaluate caregiver stress programs and their impact on family physical and emotional well-being

 

R4a: Complete ongoing data analysis of study evaluating bio-behavioral effects of mind-body interventions for caregivers of individuals with ASD.

  • Year 1:  Submit one peer-reviewed publication
  • Years 2-5: Plan and submit for federal funding to expand program

R4b: Conduct systematic, quantitative evaluation of mindfulness programs on caregiver stress and well-being (n=15 per cohort).

*Conducted in collaboration with family advocates, from identification of need to implementation

  • Year 1:  Conduct evaluation on two mindfulness cohorts
  • Years 2-5: Conduct annual evaluations on 3-4 mindfulness cohorts

R4c: Secure funding for evaluation of the contribution of race-related stress on caregiving stress in 100 mothers of individuals with ASD.

*Need identified through family advocates

  • Year 1:  Complete NIH resubmission process
  • Years 2-5: Engage in data collection and analysis

R5: Conduct research and evaluation in the area of inclusive recreation and leisure options for people with intellectual and developmental disabilities

R5a: Conduct a community-wide needs assessment in partnership with Rochester Accessible Adventures, to better understand the types of programs and opportunities that people with IDD, their family members, and their friends are looking for within the community.

R5b: Through the collaboration with the Greater Rochester YMCA, measure key outcomes of the training project, including: 1) camp counselor knowledge of disability and inclusion; 2) camp counselor self-efficacy related to supporting individuals with IDD and creating inclusive environments; 3) parent/caregiver perceptions of disability-related climate; and 4) increased service of children with disabilities in camp programming. These outcomes will be measured through a disability knowledge survey, a self-efficacy survey, parent/caregiver focus groups, and participation data collected through the YMCA.

R5c: Provide ongoing inclusivity assessments for community organizations offering recreation opportunities (n=5 annually); results will contribute to a state-wide database on the accessibility of recreation agencies.

  • Year 1:  Conduct 3 evaluations on recreation trainings
  • Years 2-5: Conduct 5 annual evaluations on recreation trainings

R5d: Systematically evaluate impact of inclusive recreation trainings (n=3 annually) on agency provider skills and self-efficacy in providing inclusive recreation opportunities.

  • Year 1:  Conduct 3 evaluations with recreation providers
  • Years 2-5: Conduct 5 annual evaluations with recreation providers