Rehabilitation Research and Training Center (RRTC) on Health and Function of People with Physical Disabilities

Background:Approximately 7.4 million people in the United States have intellectual and developmental disabilities (Residential Information Systems Project, 2022). Intellectual and developmental disabilities (IDD) are defined by limitations in adaptive functioning associated with substantial intellectual or physical impairments first evident in childhood (Schalock et al., 2010; Developmental Disabilities Assistance and Bill of Rights Act of 2000).Findings from research on the health of people with IDD in the U.S. indicate substantially higher than normal rates of complex health conditions that include high rates of co-occurring behavioral needs, mental illness, and psychiatric disability (Buckles, Lukasson & Keefe, 2013; Fletcher et al., 2007; Hemmings & Bouras, 2016). People with IDD also experience limited access to and limited use of quality preventive health care and health promotion programs, including programs serving persons with co-occurring behavioral needs, mental illness, or psychiatric disability (Anderson et al., 2013; Milne-Ives, 2022; National Association for the Dually Diagnosed, 2017; Venville et al., 2015; Whittle et al., 2018).While the health of the general population is routinely monitored through national surveys, the health of people with IDD is not (Centers for Disease Control and Prevention, 2009). As a result, significant health concerns among the population may remain largely undetected (Centers for Disease Control and Prevention, 2009; Havercamp et al., 2019). Existing literature indicates that people with IDD have poorer health and function outcomes than the general population; have costs of health and related care that are disproportionately higher than for persons without IDD; have insufficient access to and use of preventive health services; and have lifestyle and risk factors (e.g., poor nutrition, and inadequate physical activity) that are associated with poor health outcomes and premature mortality (Anderson et al., 2013; Bershadsky et al., 2012; Hsieh, Rimmer, & Heller, 2014; Kinnear et al., O'Leary, Cooper, & Hughes-McCormack, 2018; Stancliffe et al., 2011). These poor health outcomes are compounded among people with IDD from racial and ethnic minority backgrounds (Magaña et al., 2016; Scott & Havercamp, 2015). Factors associated with positive health outcomes and health-related quality of life among people with IDD include employment (Roberston et al., 2019) self-determination (Rinaldi et al., 2021), personal autonomy (Alonso-Sardon, et al., 2019), and personal autonomy support interventions (Carey et al., 2022).People with IDD rarely respond for themselves during national health surveys or in other health-related research efforts. Instead, a family member or care giver familiar with the person’s condition answers on their behalf (Walton et al., 2022). People with disabilities are excluded from most medical or health-related research studies and clinical trials (McDonald, Schwartz, & Sabatello, 2022). During a review of 300 randomly chosen studies investigators found that only 6 (2%) clearly included persons with IDD, and over 90% of studies were designed in ways that would automatically exclude people with IDD from participating (Feldman et al., 2014).The input of people with IDD in health promotion and health disparities research is critical for understanding their needs and preferences (Curtin et al., 2015). People with IDD must be included in research about their own health and well-being and asked questions in ways they can understand and answer so that health services and interventions are more responsive to their health care needs and experiences (Havercamp et al., 2022). The direct inclusion of people with IDD in health research can contribute to a better understanding of the long-term health care experiences and outcomes of this population.Research on interventions targeting health and health-related quality of life outcomes among people with IDD is limited. The effects of health interventions for people with IDD need to be studied more systematically and over longer periods of time (Byrne, Lennox & Ware, 2016; Hanlon et al., 2018). This will help to shape health care delivery, health care interventions and rehabilitation programs and ultimately improve health outcomes among people with IDD over extended periods of time (Hill et al., 2016; Lin et al., 2021).NIDILRR seeks to fund an RRTC that will generate new research-based knowledge about the health and function of people with IDD across the lifespan. This particular RRTC will be designed to continue to improve data collection instruments that allow people with IDD to participate directly in health-related research. This RRTC will also create new knowledge about the prevalence, experiences, and outcomes of people with IDD with co-occurring behavioral needs, mental illness, or psychiatric disability. This RRTC will serve as a national resource center for persons with IDD as well as stakeholders involved in providing supports and health care services to this population.References:Alonso-Sardon, M., Iglesias-de-Sena, H., Fernandez-Martin, L., Miron-Canelo, J. (2019). Do health and social support and personal autonomy have an influence on the health related quality of life of individuals with intellectual disability? BMC Health Services Research. 19, 63. https://doi.org/10.1186/s12913-018-3856-5.Anderson, L., Humphries, K., McDermott, S., Marks, B., Sisirak, J., & Larson, S. (2013). The state of the science of health and wellness for adults with intellectual and developmental disabilities. Journal of Intellectual and Developmental Disabilities 51(5), 385-98.Bershadsky, J., Taub, S., Engler, J., Moseley, C., Lakin, K. C, Stancliffe, R., Larson, S., Ticha, R., Bailey, C., and Bradley, V. (2012). Place of residence and preventive health care for intellectual and developmental disabilities services recipients in 20 states. Public Health Reports, 127(5), 475-485.Buckles, J., Luckasson, R. & Keefe, E. (2013). A systematic review of the prevalence of psychiatric disorders in adults with intellectual disability, 2003–2010. Journal of Mental Health Research in Intellectual Disabilities, 6(3), 181-207.Byrne, J. H., Lennox, N. G., & Ware, R. S. (2016). Systematic review and meta-analysis of primary healthcare interventions on health actions in people with intellectual disability. Journal of Intellectual and Developmental Disability, 41(1), 66-74.Carey, E., Ryan, R., & Dore, L. (2022). Exercising autonomy: The effectiveness and meaningfulness of autonomy support interventions engaged by adults with intellectual disability. A mixed methods-review. British Journal of Learning Disabilities. https://doi.org/10.1111/bld.12464.Centers for Disease Control and Prevention. (2009). U.S. surveillance of health of people with intellectual disabilities. A white paper. www.cdc.gov/ncbddd/disabilityandhealth/pdf/209537-A_IDmeeting%20short%2…, C., Bandind, L., Must, A., Phillips, S., Maslin, M., Lo, Charmaine, Gleason, J., Fleming, R., Stanish, H. (2015). Including youth with intellectual disabilities in health promotion research: Development and reliability of a structured interview to assess the correlates of physical activity among youth. Journal of Applied Research in Intellectual Disabilities, 29(4): 378-386.Developmental Disabilities Assistance and Bill of Rights Act of 2000 (Pub. L. 106-402).Feldman, M., Bosett, J., Collet, C., & Burnham-Riosa, P. (2014). Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. Journal for Intellectual Disability Research, 58(9), 800-809.Fletcher, R., Loschen, E., Stavrakaki, C., & First, M. (Eds.). (2007). Diagnostic manual--intellectual disability: A textbook of diagnosis of mental disorders in persons with intellectual disability. National Association for the Dually Diagnosed.Hanlon, P., MacDonald, S., Wood, K., Allan, L., & Cooper, S. A. (2018). Long-term condition management in adults with intellectual disability in primary care: a systematic review. British Journal of General Practice open, 2(1).Havercamp, S. M., Krahn, G. L., Larson, S. A., Fujiura, G., Goode, T. D., Kornblau, B. L., & National Health Surveillance for IDD Workgroup. (2019). Identifying people with intellectual and developmental disabilities in national population surveys. Intellectual and Developmental Disabilities, 57(5), 376-389.Havercamp, S. M., Barnhill, L. J., Bonardi, A., Chapman, R. A., Cobranchi, C., Fletcher, R. J., Rabidoux, P., Seeley, J. R., Tassé, M. J., & Nisonger Center RRTC on Health and Function (2022). Straight from the horse's mouth: Increasing self-report in mental health assessment in individuals with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 35(2), 471–479.Hemmings, C., & Bouras, N. (Eds.). (2016). Psychiatric and behavioural disorders in intellectual and developmental disabilities. Cambridge University Press.Hill, K. G., Woodward, D., Woelfel, T., Hawkins, J. D., & Green, S. (2016). Planning for long-term follow-up: Strategies learned from longitudinal studies. Prevention Science, 17(7), 806-818.Hsieh, K., Rimmer, J. H., & Heller, T. (2014). Obesity and associated factors in adults with intellectual disability. Journal of Intellectual Disability Research, 58(9), 851-863.Kinnear, D., Morrison, J., Allan, L., Henderson, A., Smiley, E., & Cooper, S. A. (2018). Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. British Medical Journal open, 8(2), e018292.Larson, S. A., Lakin, K. C., Anderson, L., Lee, N. K., Lee, J. K., and Anderson, D. (2001). Prevalence of mental retardation and developmental disabilities: Estimates from the 1994/1995 National Health Interview Survey Disability Supplements. American Journal on Mental Retardation, 106(3), 231-252.Lin, E., Balogh, R., Chung, H., Dobranowski, K., Durbin, A., Volpe, T., & Lunsky, Y. (2021). Looking across health and healthcare outcomes for people with intellectual and developmental disabilities and psychiatric disorders: population-based longitudinal study. The British Journal of Psychiatry, 218(1), 51-57.Magaña, S., Parish, S., Morales, M. A., Li, H., & Fujiura, G. (2016). Racial and ethnic health disparities among people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 54(3), 161-172.McDonald, K., Schwartz, A., & Sabatello, M. (2022). Eligibility criteria in NIH-funded clinical trials: Can adults with intellectual disability get in? Disability and Health Journal. 15(4). https://doi.org/10.1016/j.dhjo.2022.101368.Milne-Ives, M., Shankar, R., Goodley, D., Lamb, K., Laugharne, R., Harding, T., & Meinert, E. (2022). Humanizing Health and Social Care Support for People With Intellectual and Developmental Disabilities: Protocol for a Scoping Review. Journal of Medical Internet Research Protocols, 11(5), e31720.National Association for the Dually Diagnosed. (2017). Including individuals with intellectual/developmental disabilities and co-occurring mental illness: Challenges that must be addressed in health care reform. https://aaidd.org/docs/default-source/policy/including-individuals-with…, L., Cooper, S. A., & Hughes‐McCormack, L. (2018). Early death and causes of death of people with intellectual disabilities: a systematic review. Journal of Applied Research in Intellectual Disabilities, 31(3), 325-342.Residential Information Systems Project (2022). People with IDD in the United States. Minneapolis: University of Minnesota, RISP, Research and Training Center on Community Living, Institute on Community Integration. https://risp.umn.edu.Rinaldi, R., Duplat, J., Haelewyck, M. (2021). Is health a priority: Examining health related support needs in adults with intellectual disability through a self-determination framework. Journal of Intellectual Disabilities. 26(3). https://doi.org/10.1177/17446295211009660.Robertson, J., Beyer, S., Emerson, E., Baines, S., & Hattton (2019). The association between employment and the health of people with intellectual disabilities: A systematic review. Journal of Applied Research in Intellectual Disabilities. June 2019. https://doi.org/10.1111/jar.12632.Schalock, R. L., Borthwick-Duffy, S. A., Bradley, V. J., Buntinx, W. H. E., Coulter, D. L., Craig, E. M., Gomez, S. C., Lachapelle, Y., Luckasson, R., Reeve, A., Shogren, K. A., Snell, M. E., Spreat, S., Tasse, M. J., Thompson, J. R., Verdugo-Alonso, M. A., Wehmeyer, M. L., and Yeager, M. H. (2010). Intellectual disability: Definition, classification, and systems of supports (11th ed.). Washington, DC: American Association on Intellectual and Developmental Disabilities.Scott, H. M., & Havercamp, S. M. (2014). Race and health disparities in adults with intellectual and developmental disabilities living in the United States. Intellectual and Developmental Disabilities, 52(6), 409-418.Stancliffe, R., Lakin, K. C., Larson, S., Taub, S., Engler, J., Bershadsky, J., and Fortune, J., (2011). Overweight and obesity among adults with intellectual disabilities who use intellectual disability/developmental disability services in 20 U.S. States. American Journal on Intellectual and Developmental Disabilities, 116(6), 401-418.Venville, A., Sawyer, A., Long, M., Edwards, N. & Hair, S. (2015). Supporting people with an intellectual disability and mental health problems: A scoping review of what they say about service provision. Journal of Mental Health Research in Intellectual Disabilities, 8(3-4), 186-212.Walton, K., Krahn, G. L., Buck, A., Andridge, R., Lecavalier, L., Hollway, J. A., Davies, D. K., Arnold, L. E., Havercamp, S. M., & Nisonger RRTC on Health and Function (2022). Putting "ME" into measurement: Adapting self-report health measures for use with individuals with intellectual disability. Research in Developmental Disabilities, 128, 104298.Whittle, E. L., Fisher, K. R., Reppermund, S., Lenroot, R., & Trollor, J. (2018). Barriers and enablers to accessing mental health services for people with intellectual disability: a scoping review. Journal of Mental Health Research in Intellectual Disabilities, 11(1), 69-102.Priority:The Administrator of the Administration for Community Living (ACL) establishes a priority for an RRTC on Health and Function among People with Intellectual and Developmental Disabilities (IDD). The RRTC must conduct research that contributes to the outcome of improving the long-term health and function outcomes and health related quality of life among people with IDD by:(a) Developing and testing cognitively accessible diagnostic tools and data collection instruments that allow people with IDD to respond to questions directly or with proper technical assistance in order to assess their health, well-being, and health-related quality of life. This work must build upon existing knowledge and current practice. This measurement development work must include activities in one or more of the following areas:(i) Implementing reliability and validity studies to learn about the psychometric qualities of these tools and instruments and establish their usefulness and user friendliness.(ii) Advancing the knowledge of how people with IDD cognitively process questions, recall information, face choices given by structured responses, communicate their responses, or otherwise attempt to participate in health-related research.(iii) Exploring the use of person-centered approaches and similar techniques that allow people with IDD to participate to the greatest extent possible in health-related research.(b) Conducting research on the prevalence, health care experiences, or health outcomes of people with IDD who have co-occurring behavioral needs, mental illness, or psychiatric disability. This research should focus on one or more of the following areas:(i) Developing up-to-date estimates of the prevalence of behavioral needs, mental illness, or psychiatric disability among the population of people with IDD.(ii) Generating new knowledge about the health care needs and experiences of people with IDD who have co-occurring behavioral needs, mental illness, or psychiatric disability.(iii) Generating new knowledge about the health outcomes of people with IDD who have co-occurring behavioral disorders, mental illness, or psychiatric disability.(iv) Generating new knowledge toward promising practices and effective approaches for providing high-quality health care and behavioral health care to people with IDD who have co-occurring behavioral disorders, mental illness, or psychiatric disability.(c) Focusing its research on one or more specific stages of research. If the RRTC is to conduct research that can be categorized under more than one of the research stages, or research that progresses from one stage to another, those stages must be clearly specified. These stages and their definitions are provided in this section of the funding opportunity announcement. This RRTC must conduct at least one research study that aims to develop, or develop and test an intervention that aims to improve health and function outcomes among people with IDD. This study or studies must be conducted at the intervention development or intervention efficacy stage of research.(d) Working closely with NIDILRR and ACL to develop plans and infrastructure for a sustainable long-term effort to collect longitudinal health and community living data from people with IDD.(e) Demonstrating, in its original application, that people with IDD from racial and ethnic minority backgrounds will be included in study samples in sufficient numbers to generate knowledge and products that are relevant to the racial and ethnic diversity of the population of people with IDD being studied. The RRTC must describe and justify, in its original application, the planned racial and ethnic distribution of people with IDD who will participate in the proposed research activities.(f) Serving as a national resource center on the health and function of people with IDD by conducting knowledge translation activities that include, but are not limited to:(i) Providing information and technical assistance to people with IDD and their representatives, service providers, and other key stakeholders.(ii) Providing training, including graduate, pre-service, and in-service training, to health care and rehabilitation providers and other disability service providers, to facilitate more effective delivery of services to people with IDD. This training may be provided through conferences, workshops, public education programs, in-service training programs, and similar activities.(iii) Disseminating research-based information and materials related to health and function among people with IDD, to people with IDD and their representatives and other key stakeholders.(iv) Involving people with IDD and members of other key stakeholder groups in conducting the RRTC’s research and related activities in order to maximize the relevance and usability of the new knowledge generated by the RRTC. Stakeholder groups include but are not limited to professionals and organizations providing services and supports to people with IDD. Definitions - Stages of Research: Exploration and discovery means the stage of research that generates hypotheses or theories through new and refined analyses of data, producing observational findings and creating other sources of research-based information.  This research stage may include identifying or describing the barriers to and facilitators of improved outcomes of individuals with disabilities, as well as identifying or describing existing practices, programs, or policies that are associated with important aspects of the lives of individuals with disabilities.  Results achieved under this stage of research may inform the development of interventions or lead to evaluations of interventions or policies.  The results of the exploration and discovery stage of research may also be used to inform decisions or priorities.Intervention development means the stage of research that focuses on generating and testing interventions that have the potential to improve outcomes for individuals with disabilities.  Intervention development involves determining the active components of possible interventions, developing measures that would be required to illustrate outcomes, specifying target populations, conducting field tests, and assessing the feasibility of conducting a well-designed intervention study. Results from this stage of research may be used to inform the design of a study to test the efficacy of an intervention.Intervention efficacy means the stage of research during which a project evaluates and tests whether an intervention is feasible, practical, and has the potential to yield positive outcomes for individuals with disabilities.  Efficacy research may assess the strength of the relationships between an intervention and outcomes and may identify factors or individual characteristics that affect the relationship between the intervention and outcomes.  Efficacy research can inform decisions about whether there is sufficient evidence to support “scaling-up” an intervention to other sites and contexts.  This stage of research may include assessing the training needed for wide-scale implementation of the intervention and approaches to evaluation of the intervention in real-world applications.Scale-up evaluation means the stage of research during which a project analyzes whether an intervention is effective in producing improved outcomes for individuals with disabilities when implemented in a real-world setting.  During this stage of research, a project tests the outcomes of an evidence-based intervention in different settings.  The project examines the challenges to successful replication of the intervention and the circumstances and activities that contribute to successful adoption of the intervention in real-world settings.  This stage of research may also include well-designed studies of an intervention that has been widely adopted in practice, but lacks a sufficient evidence base to demonstrate its effectiveness.