RRTCDD Research Projects

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Over 20 years, the RRTCDD has made significant contributions to advance the research on lifespan and intellectual / developmental disabilities through Current research projects in the RRTCDD include the 5 research projects listed below:

National Health Outcomes Indicators

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Health and Function of Individuals with Intellectual and Developmental Disabilities: National Health Outcomes Indicators Program

The national health outcomes indicators project proposes a coordinated, multi-center secondary analysis program agenda under the direction of three leading researchers in population studies and I/DD: Drs. Glenn Fujiura and Sandra Magana of UIC and Dr. Susan Parish of Brandeis. The proposed research agenda is organized around the first ever I/DD-focused analysis of linked Medical Expenditure Panel Survey (MEPS) data with National Health Interview Survey (NHIS) spanning 16+ years, from 1996 to 2011. As described in greater detail in the literature review, this linkage is a powerful and innovative approach with several critical research implications:

Specific Aims:
1. Using the diagnostic codes embedded in the NHIS, the extensive array of MEPs health services and service cost data can be employed in a targeted analysis of I/DD. Previous applications of the MEPS have focused on the heterogeneous grouping of subgroups of persons with “cognitive” impairments – for example, dementia, brain injury, among others in addition to I/DD).
2. Pre- and post comparisons are possible with the linkage. MEPS is a “panel” survey, that is, interviews are conducted repeatedly over a two year period. Each MEPS sample in turn is linked to the previous year’s NHIS sample data (since MEPS samples are drawn from the prior year NHIS). Thus, pre-post comparisons between a NHIS defined grouping and MEPS services, costs, and health outcomes data is possible. For example, the comparison of insurance coverage or lack of coverage in 2009 could be linked to health outcomes in 2011.
3. Sixteen years of linked MEPS NHIS data provide significant opportunities for cross-sectional, longitudinal analyses. For example, the evaluations trends in the I/DD population from 1996 through 2011 can be explored. As noted below, sample size limitations may require the collapsing of multiple years and year-to-year comparisons may not be feasible. However, general trends over time can be evaluated.
4. Most critically, the MEPS and NHIS are ongoing annual data collection programs of the federal government providing a sustainable and ongoing baseline of health data. The absence of a consistent base of information drawn from a sustainable data collection framework prevents us for example, from asking whether the Surgeon General’s initiatives at the outset of the 21st Century 53 have had an impact on the health of Americans with I/DD.

We (people with I/DD) are invisible in the data.
National Health Outcomes Indicators
The National Health Outcomes Indicators project is under the direction of three leading researchers in population studies and I/DD: Drs. Glenn Fujiura and Sandra Magana of UIC and Dr. Susan Parish of Brandeis.
Site under construction.
Longitudinal Health and ID Study (LHIDS)

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Longitudinal Health and Intellectual Disability Study (LHIDS): Examining the Effects of Modifiable Health Behaviors on Health and Function in Adults with I/DD

Using the original LHIDS instruments along with more refined recruitment methodologies, we propose to supplement the sample with 1,500 additional respondents— 500 from Black, Latino, and Asian American racial/ethnic backgrounds, and 1,000 from regions under-represented in the original study—to begin a longitudinal study to complement the LHIDS while we follow-up with the existing cohort for three more time points (2014, 2016, 2018).

Specific Aims:
1. To examine whether there are racial and ethnic disparities in chronic health conditions, health behaviors(physical activity, dietary habits, smoking, alcohol intake, and oral hygiene) , health care access and utilization among adults with I/DD in general and at each time point.
2. To examine changes across time in the prevalence of five health behaviors and their impact on Health-related Quality of Life (HRQOL) and chronic health conditions in adults with I/DD by gender, age group, level of ID, specific diagnostic group, race/ethnicity, and residential setting.
3. To examine the impact of health behavior changes across time on psychosocial well-being and community participation in adults with I/DD by gender, age group, level of ID, specific diagnostic group, race/ethnicity, and residential setting.

Longitudinal health behavior data can support development of targeted health promotion programs.
The Longitudinal Health and ID Study (LHIDS) project is under the direction of Drs. Kelly Hsieh and Sandra Magana.
Site under construction.
Reducing Obesity through POWERS

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POWERSforID: A Telehealth Weight Management System for Adults with Intellectual Disability

This project will repurpose this successful integrated clinical and behavioral information and communication technology (ICT) system for obese adults with ID. The system, referred to as POWERS (Personalized Online Weight and Exercise Response System), is a novel, multifocal-centered tailored intervention utilizing an innovative online tool designed to facilitate improvements in physical activity and nutritional behaviors.

Specific Aims:
1. Customize the personalized online remote weight management coaching system demonstrated effective in previous research18 for adults with ID and referred to as POWERSforID.
2. Conduct a pilot study to assess the feasibility (i.e., acceptability and usability) and preliminary efficacy of POWERSforID.
3. Conduct a randomized controlled trial (RCT) to examine the effect of POWERSforID in improving health status and reducing body weight in obese adults with ID.

A facilitating environment can support health promotion activities.
The Reducing Obesity through POWERS project is under the direction of Drs. James Rimmer, David Ervin, and David Braddock.
Site under construction.
HealthMatters Program Scale-Up Impact Study

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HealthMatters Program Impact Study: Multi-State Systematic Approach

This project will examine the challenges to successful replication of the HealthMatters Program intervention, and the conditions and activities that contribute to effective adoption in real-world settings. By implementing this project, we have a unique opportunity to contribute to the larger body of research and science by developing a Scale-Up Logic Model detailing the necessary components to achieve systematic reach and impact among a population that often receives lifelong community based supports and health care services within complex and divers systems across the U.S.

Specific Aims:
1. Test the efficacy of a tailored multi-level scale-up platform across three states to determine processes that facilitate maximal reach and impact of the HealthMatters Program (policy/fiscal level reach).
2. Assess the capacity to support local CBOs in implementing the evidence-based HealthMatters Program within each state (community level reach).
3. Evaluate the impact of the HealthMatters Program for people with I/DD and their support persons (individual level reach).

We need effective platforms to scale up “what works” to to improve health and function of people with I/DD.
HealthMatters Program Study
The HealthMatters Program Impact Project is under the direction of Drs. Beth Marks and Jasmina Sisirak of UIC, Dina Donohue-Chase and Kristin Krok of NorthPointe Resources, and Erika Magallanas of UIC.
Community-Based Health Promotion Outreach

The HealthMatters Community Academic Partnership (HealthMatters CAP) team has trained over 2000 instructors in 20 states and 5 countries have been certified by the HMCAP as Certified Instructors to start a health promotion program for people with I/DD to manage their health by being more physically active and making healthier food choices to reduce the onset of chronic health conditions (e.g., diabetes, hypertension, cardiovascular disease).

We have developed partnerships with 23 CBOs across the U.S. and Ireland through the HealthMatters Program and conduct trainings, workshops, presentations, and technical assistance through the following 8 HealthMatters Programs:
  1. HealthMessages Program: Becoming a Healthy Lifestyle Coach
  2. HealthMatters Program: Train-the-Trainer Certified Instructor Workshop
  3. HealthMatters: Getting the Memo
  4. HealthMatters: Developing Community Academic Partnerships for Service Learning, Research, and Training to Improve Health Outcomes for Individuals with Intellectual/Developmental Disabilities
  5. Signs & Symptoms Program: Early Recognition of Emerging Health Problems
  6. Health Matters for People with Developmental Disabilities: Promoting Health Advocacy
  7. What About Staff: Impact of HealthMatters Program for Employees in Day/Residential CBOs
  8. HealthMatters 4kids: Today Counts for Diabetes Prevention

We continue to initiated partnerships with CBOs, UCEDDs, and a State DD Councils to build capacity and develop systematic methods for increasing awareness for health promotion statewide using a peer to peer health messages program.
Impact of Managed Care

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The Impact of Medicaid Managed Care on the Health and Function of Adults with Intellectual/Developmental Disabilities

Specific Aims:
1. To examine differential health care utilization outcomes of people with I/DD based on whether they are receiving MMC through ICP or FFS Medicaid, including sub-analyses for people with I/DD who also have diabetes, heart disease, and/or dementia. We do not hypothesize any significant differences between people with I/DD with these conditions and people with I/DD in general, although the high rate of these conditions among people with I/DD make this important to explore.
2. To assess the impact of ICP on people with I/DD related to their health care satisfaction, health status, activities of daily living, and community participation.
3. To qualitatively explore participant experiences with and perspectives on their healthcare and long-term services and supports for people with I/DD on ICP as compared to FFS.

People with I/DD urgently need improved access to and higher quality of health care.
Managed Care Study
The Impact of Managed Care project is under the direction of Drs. Tamar Heller, and Randall Owen, and Kiyoshi Yamaki of UIC.
Site under construction.