Restricted accessResearch articleFirst published online 2025-9
Trust,respect,and training: Principles of care for service professionals supporting adults with intellectual disabilities in community residential programs
Adults with intellectual disabilities in community residential programs receive services from direct support professionals (DSPs) intended to facilitate community engagement. As part of a rate study for Washington State’s Developmental Disabilities Administration on community residential services, adults in these programs were asked to provide their perspective on the quality and effectiveness of their care. Twenty‐five adults with intellectual disabilities were interviewed focusing on daily activities, staffing, and living situations. Interview transcripts were coded and analyzed for dominant themes. Participants emphasized the desire for trustworthy, caring, and respectful DSPs; DSPs trained in behavioral management techniques made participants feel safe and supported. Nearly all participants called for greater staffing stability. People living in community residential programs are profoundly impacted by the stress and uncertainty of DSPs facing limited resources and high staff turnover. Stable, consistent support makes it easier for participants to engage in community integration.
BercawLELevinsonAFletcherD, et al. (2022) Assessing Disparities in Medicaid Home-and Community-Based Services: A Systematic Review. Journal of Aging & Social Policy. Taylor & Francis: 1–20.
4.
BogenschutzMDHewittANordD, et al. (2014) Direct Support Workforce Supporting Individuals With IDD: Current Wages, Benefits, and Stability. Intellectual and Developmental Disabilities52(5): 317–329.
5.
BurkeMMLulinskiAJonesJ, et al. (2018) A review of supports and services for adults with intellectual and developmental disabilities (IDD) and their families in the United States: Past and present contexts impacting future research, practice and policy. International review of research in developmental disabilities54. Elsevier: 137–176.
6.
CaldwellJMachledtD (2022) Advancing Policy and Practice in Medicaid Home and Community-Based Services Quality. Frontiers in Rehabilitation Sciences. Frontiers:93.
7.
CaldwellJHeymanMAtkinsM, et al. (2022) Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19. Disability and Health Journal15(3): 101313.
8.
CharltonJI (1998) Nothing About Us Without Us: Disability Oppression and Empowerment. 1st ed.University of California Press. Available at:https://www.jstor.org/stable/10.1525/j.ctt1pnqn9 (accessed 7 September 2023).
9.
ChongNAkobirshoevICaldwellJ, et al. (2022) The relationship between unmet need for home and community-based services and health and community living outcomes. Disability and Health Journal15(2). Elsevier: 101222.
EmersonRMFretzRIShawLL (1995) Processing fieldnotes: Coding and memoing. Writing ethnographic fieldnotes:142-168.
12.
FabiusCDOgarekJShiremanTI (2019) Racial disparities in Medicaid home and community-based service utilization among white, black, and Hispanic adults with multiple sclerosis: Implications of state policy. Journal of Racial and Ethnic Health Disparities6(6). Springer: 1200–1207.
13.
FriedmanC (2018) Direct support professionals and quality of life of people with intellectual and developmental disabilities. Intellectual and developmental disabilities56(4). The American Association on Intellectual and Developmental Disabilities: 234–250.
14.
FriedmanC (2020) The Impact of Home and Community Based Settings (HCBS) Final Settings Rule Outcomes on Health and Safety. Intellectual and Developmental Disabilities58(6): 486–498.
15.
FriedmanC (2021) The Impact of Direct Support Professional Turnover on the Health and Safety of People With Intellectual and Developmental Disabilities. Inclusion9(1): 63–73.
16.
FriedmanCRizzoloMC (2016) Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers. Intellectual and Developmental Disabilities54(4): 233–244.
17.
HarringtonCKangT (2016) Disparities in service use and expenditures for people with intellectual and developmental disabilities in California in 2005 and 2013. Intellectual and Developmental Disabilities54(1). The American Association on Intellectual and Developmental Disabilities: 1–18.
18.
McDonaldKEKidneyCA (2012) What Is Right? Ethics in Intellectual Disabilities Research: Research Ethics. Journal of Policy and Practice in Intellectual Disabilities9(1): 27–39.
19.
McLeanKJHoekstraAMBishopL (2021) United States Medicaid home and community-based services for people with intellectual and developmental disabilities: A scoping review. Journal of Applied Research in Intellectual Disabilities34(3). Wiley Online Library: 684–694.
20.
MillerSMvan HeumenL (2021) Inclusive online research with people labeled with intellectual and developmental disabilities during the COVID-19 pandemic: Technological adaptations. Journal of Enabling Technologies15(2). Emerald Publishing Limited: 122–135.
21.
MitraMBogenKLong-BellilLM, et al. (2011) Unmet needs for home and community-based services among persons with disabilities in Massachusetts. Disability and health journal4(4): 219–228.
OlsmanENieuwenhuijseAMWillemsDL (2022) ‘My son has lost his dignity’: dignity of persons with profound intellectual and multiple disabilities. Disability & Society0(0). Routledge: 1–18.
24.
OrdwayAJohnsonKLKnealeL, et al. (2019) The experience of home care providers and beneficiaries with enhanced training requirements in Washington State. Journal of aging and health31(10_suppl). SAGE Publications Sage CA: Los Angeles, CA: 124S-144S.
25.
PettingellSLHouseworthJTicháR, et al. (2022) Incentives, Wages, and Retention Among Direct Support Professionals: National Core Indicators Staff Stability Survey. Intellectual and Developmental Disabilities60(2): 113–127.
26.
RizzoloMCFriedmanCLulinski-NorrisA, et al. (2013) Home and Community Based Services (HCBS) Waivers: A Nationwide Study of the States. Intellectual and Developmental Disabilities51(1): 1–21.
27.
SandelowskiM (2000) Whatever Happened to Qualitative Description?Research in Nursing & Health23(4): 334-340.
28.
SandelowskiM (2010) What’s in a Name? Qualitative Description Revisited. Research in Nursing & Health31(3): 77-84.
29.
StancliffeRJPettingellSLHouseworthJ, et al. (2023) Participation and Companions for Socially Inclusive Community Activities by U.S. Adults With Intellectual and Developmental Disabilities. Intellectual and Developmental Disabilities61(4): 326–344.
WilliamsVTarletonBHeslopP, et al. (2018) Understanding disabling barriers: a fruitful partnership between Disability Studies and social practices?Disability & Society33(2). Routledge: 157–174.
