The United States Supreme Court’s Olmstead decision, 527 U.S. 581 (1999), affirmed that States shall provide services “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 C.F.R.§ 35.130(d). Federal efforts to support the implementation of this decision have included, among others, the New Freedom Initiative, the Year of Community Living, Community First Choice, and the Money Follows the Person demonstration program. Despite these national efforts, individuals with disabilities of all ages continue to experience significant barriers to living in the community and participating in typical educational, employment, recreational, and civic and social activities (Reinhart, et al., 2011; Houtenville, et al., 2015; Brault, 2012; National Council on Disability (NCD), 2004; Rimmer et al., 2004; Gibson, 2003). Barriers to community living and participation include, but are not limited to, insufficient affordable home and community-based long-term services and supports (LTSS), such as personal assistance, assistance for family caregivers, assistive technologies and devices, and home modifications; shortages of affordable and accessible housing; inadequate transportation services; limited personal knowledge of community resources; and poor health status (Cooper, O’Hara & Zovistowski, 2011; Reinhart et al., 2011; NCD, 2004; Rimmer, et al., 2004; Gibson, 2003; Mahmoudi & Meade, 2015; Magana, et al. 2016).
U.S. Census Bureau data indicate that an estimated 8 million adults in the non-institutionalized population need personal assistance with activities of daily living (e.g., bathing, dressing, and toileting) (Houtenville, et al., 2016). While studies show that most adults requiring assistance with daily activities prefer to live with support in their own homes (Salomon, 2010; Gibson, 2003), there is a growing disparity between the need for and supply of paid and informal direct care workers and family caregivers (Paraprofessional Healthcare Institute (PHI), 2008; Hewitt et al., 2008; U.S. Department of Health and Human Services, 2003). In a 2007 national survey, 86 percent of states considered the shortage of direct care workers to be a serious issue affecting their ability to meet the growing demand for long-term services and supports among adults with disabilities (PHI, 2009).
Individuals with disabilities, especially those with more significant disabilities, report feeling socially isolated and lonely in their communities (Price, Stephenson, Krantz & Ward, 2011). They are less satisfied with their community participation than their counterparts without disabilities and participate in fewer community activities than their counterparts without disabilities (Sheppard-Jones, Prout & Kleinert, 2005; Hammel, et al. 2015). For example, despite the evidence of benefits of regular physical activity for health and functioning, individuals with disabilities are far less likely to engage in physically active lifestyles than are individuals without disabilities (Rimmer, et al., 2004; Rimmer & Marques, 2012; Spivock, et al., 2008).
NIDILRR has funded a wide range of disability research and development projects related to the community living and participation of individuals with disabilities. NIDILRR seeks to build on these investments by supporting innovative and well-designed research and development projects that fall under one or more of NIDILRR’s general “community living and participation” priority areas, as described in the following priority. NIDILRR hopes to increase competition and innovation by allowing applicants to specify the research topics under the broad priority areas within the community living and participation domain. If an applicant proposes to conduct research activities, the applicant must identify the relevant priority area or areas, indicate the stage or stages of the proposed research (i.e., exploration and discovery, intervention development, intervention efficacy, and scale-up evaluation), justify the need and rationale for research at the proposed stage or stages, and describe fully an appropriate methodology or methodologies for the proposed research.
To address disparities in community participation, and to improve the opportunities and abilities of individuals with disabilities to live as integrated members of their communities, NIDILRR proposes to fund Disability and Rehabilitation Research Projects on Community Living and Participation for Individuals with Disabilities.
Brault, M.W. (2012) Americans with Disabilities: 2010. Washington, DC: U.S. Department of Commerce, U.S. Census Bureau. Economics and Statistics Administration, July 2012.
Cooper, E., O’Hara, A., Zovistoski, A. (2015). Priced Out: The Housing Crisis for People with Disabilities. Technical Assistance Collaborative, Inc. Consortium for Citizens with Disabilities, Housing Task Force. Available from: http://www.tacinc.org/media/52012/Priced%20Out%20in%202014.pdf.
Gibson M.J. (2003) Beyond 50.03: A Report to the Nation on Independent Living and Disability.Washington, DC: AARP Public Policy Institute (PPI). Available from: https://assets.aarp.org/rgcenter/il/beyond_50_il_1.pdf.
Hammel, Joy; Magasi, Susan; Heinemann, Allen W.; Gray, David B.; Stark, Susan; Kisala, Pamela; Carlozzi, Noelle E.; Tulsky, David; Garcia, Sofia F. & Hahn, Elizabeth A (2015). Environmental barriers and supports to everyday participation: A qualitative insider perspective from people with disabilities. Archives of Physical Medicine and Rehabilitation, Volume 96(4), Pgs. 578-588.
Hewitt, A, Larson, S., Edelstein, S., Seavey, D., Hoge, M., Morris, J. (2008). A Synthesis of Direct Service Workforce Demographics and Challenges Across Intellectual/ Developmental Disabilities, Aging, Physical Disabilities, and Behavioral Health. National Direct Service Workforce Resource Center. Available from: https://rtc.umn.edu/docs/Cross-DisabilitySynthesisWhitePaperFINAL.pdf.
Houtenville, Andrew J., Brucker, Debra L. & Lauer, Eric A. (2016). Annual Compendium of Disability Statistics: 2015. Durham, NH: University of New Hampshire, Institute on Disability.
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.
Mahmoudi, E & Meade, M. A. (2015). Disparities in access to health care among adults with physical disabilities: Analysis of a representative national sample for a ten-year period. Disability and Health Journal, Volume 8(2), 82-190.
National Council on Disability (NCD). (2004) Livable Communities for Adults with Disabilities. National Council on Disability: Washington, DC. Available from: http://www.ncd.gov/publications/2004/12022004.
PHI (formerly the Paraprofessional Healthcare Institute) (2008). Occupational Projections for Direct-Care Workers 2006-2016, Facts 1. Bronx, NY: PHI. Available from: https://phinational.org/wp-content/uploads/legacy/clearinghouse/BLSfact….
PHI (formerly the Paraprofessional Healthcare Institute) (2009). The 2007 National Survey of State Initiatives on the Direct-Care Workforce: Key Findings. Prepared by PHI and the Direct Care Workers Association of North Carolina (DCWA-NC). Available from: https://phinational.org/wp-content/uploads/legacy/clearinghouse/RESULTS….
Price, P., Stephenson, S., Krantz, L., Ward, K. (2011) Beyond my Front Door: The Occupational and Social Participation of Adults with Spinal Cord Injury. OTJR: Occupation, Participation, and Health. 31(2): 81-88).
Reinhart, SC, Kassner, E, Houser, A. and Mollica, R. (September 2011) Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers. The AARP Foundation: Washington, DC. Available from: http://assets.aarp.org/rgcenter/ppi/ltc/ltss_scorecard.pdf.
Rimmer J, Riley B, Wang E, Rauworth A., Jurkowski J. (2004) Physical Activity Participation Among Persons with Disabilities: Barriers and Facilitators. American Journal of Preventive Medicine, 26(5).
Rimmer, James H., & Marques, Alexandre C. ( 2012). Physical activity for people with disabilities. The Lancet , 380(9838): 193-195.
Salomon, E. (2010) AARP Public Policy Institute: Housing Policy Solutions to Support Aging in Place. Fact Sheet 172. ARRP Center for Housing Policy: Washington, DC. Available from: http://assets.aarp.org/rgcenter/ppi/liv-com/fs172-aging-in-place.pdf.
Sheppard-Jones, K, Prout, T, Kleinert, H (2005). Quality of Life Dimensions for Adults with Developmental Disabilities: A Comparative Study. Mental Retardation. 43(4): 281-291.
Spivock M., Gauvin L., Riva M, Brodeur JM. (2008). Promoting Active Living Among People with Physical Disabilities: Evidence for Neighborhood-Level Buoys. American Journal of Preventive Medicine; 34(4): 291-298.
U.S. Department of Health and Human Services (2003), Office of the Assistant Secretary for Planning and Evaluation. The Future Supply of Long-Term Care Workers in Relation to the Aging Baby Boom Generation: Report to Congress. May 14, 2003. Available from: http://aspe.hhs.gov/daltcp/reports/ltcwork.pdf.
Priority--DRRP on Community Living and Participation of Individuals with Disabilities
The Administrator of the Administration for Community Living establishes a priority for a Disability Rehabilitation Research Project (DRRP) on Community Living and Participation of Individuals with Disabilities. The DRRP must contribute to the outcome of maximizing the community living and participation outcomes of individuals with disabilities.
To contribute to this outcome, the DRRP must--
(a) Conduct research in one or more of the following priority areas, focusing on individuals with disabilities as a group or on individuals in specific disability or demographic subpopulations of individuals with disabilities:
(i) Technology to improve community living and participation outcomes for individuals with disabilities.
(ii) Individual and environmental factors associated with improved community living and participation outcomes for individuals with disabilities.
(iii) Interventions that are designed to contribute to improved community living and participation outcomes for individuals with disabilities. Interventions include any strategy, practice, program, policy, or tool that, when implemented as intended, contributes to improvements in outcomes for individuals with disabilities.
(iv) Effects of government policies and programs on community living and participation outcomes for individuals with disabilities.
(v) Practices and policies that contribute to improved community living and participation outcomes for transition-aged youth with disabilities.
(b) Focus its research on a specific stage of research. If the DRRP is to conduct research that can be categorized under more than one stage, including research that progresses from one stage to another, those stages must be clearly specified and justified. These stages: exploration and discovery, intervention development, intervention efficacy, and scale-up evaluation, are defined in this funding opportunity announcement. Applicants must justify the need and rationale for research at the proposed stage or stages and describe fully an appropriate methodology or methodologies for the proposed research.
(c) Conduct knowledge translation activities (i.e., utilization, dissemination) in order to facilitate stakeholder (e.g., individuals with disabilities, employers, policymakers, practitioners) use of the knowledge, interventions, programs, technologies, or products that resulted from the research activities conducted under paragraph (1)(a) of this priority.
(d) Involve key stakeholder groups in the activities conducted under paragraph (1)(a) of this priority in order to maximize the relevance and usability of the research products to be developed under this priority.
Definition: Stages of Research
(a) Exploration and discovery means the stage of research that generates hypotheses or theories by conducting 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.
(b) 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 interventions study. Results from this stage of research may be used to inform the design of a study to test the efficacy of an intervention.
(c) 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 can include assessing the training needed for wide-scale implementation of the intervention and approaches to evaluation of the intervention in real world applications.
(d) 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. It 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 that lacks a sufficient evidence-base to demonstrate its effectiveness.