Effects of person-centred planning and practices on the health and well-being of adults with intellectual and developmental disabilities: a multilevel analysis of linked administrative and survey data.
Large U.S. survey shows adults with IDD feel more control and better well-being when their service plans use person-centred language and their state supports the approach.
01Research in Context
What this study did
Researchers looked at 22 000 adults with intellectual or developmental disabilities. They checked how much person-centred language was in each adult's service plan. They also rated how strongly each U.S. state pushed person-centred planning. Then they asked the adults how much control they felt over daily life and how good they felt overall.
The team linked the plan scores and state scores to the survey answers. This let them see if more personal content in plans, or living in a pro-PCP state, went hand in hand with better self-reports.
What they found
Adults whose plans held more person-centred wording said they had more control and higher well-being. Living in a state that promoted PCP also predicted better scores, even after accounting for other differences. The effects were small but held across the huge sample.
How this fits with other research
Vassos et al. (2016) pooled earlier trials and saw modest gains in choice-making, but warned the evidence was thin. Torelli et al. (2023) now supplies the large, linked data set those reviewers asked for.
Fahmie et al. (2013) looked at Dutch planning meetings and found adults felt passive and unheard. That picture seems opposite to the new U.S. results. The gap likely reflects real cultural and procedural differences: Dutch staff treated plans as paperwork, while U.S. plans with richer personal content were tied to stronger state policies and easier-to-reach case managers.
Navas et al. (2025) report very large quality-of-life jumps when adults move from institutions to community homes. They show choice opportunities are the active ingredient. Torelli et al. (2023) echo this at the paperwork level: simply writing plans around personal goals predicts more control, even without a house move.
Why it matters
You can strengthen well-being without big funding. Ask to see each client's latest plan. Add a short section that names what the client wants each day—food, music, social time. Track if those lines grow at the next annual update. Push for state or agency policies that require a face-to-face meeting if the client (or guardian) asks. Small plan tweaks, done widely, link to real gains in adults' sense of control.
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02At a glance
03Original abstract
BACKGROUND: A person-centred service planning and practice approach (PCP) is one that is driven by service users' individual preferences, needs and priorities. The approach has been identified as a best practice and is codified in US policies that encourage and, in some contexts, require state systems of home and community-based services to adopt and demonstrate person-centred practice. However, there is insufficient research on PCP's direct impact on outcomes for service users. This study aims to contribute to the evidence base in this area by investigating the association between service experiences and outcomes of adults with intellectual and developmental disabilities (IDD) receiving state-funded services. METHODS: The data for the study come from the 2018-2019 National Core Indicators® In-Person Survey that links survey responses with administrative records for a sample of 22 000 adults with IDD receiving services from 37 state developmental disabilities (DD) systems. Associations among service experiences and outcomes of survey participants are examined through multilevel regression techniques that include participant-level responses and state-level measures of PCP. The state-level measures are constructed by combining administrative records describing participants' service plans with the priorities and goals they expressed in response to the survey. RESULTS: Case managers' (CM) accessibility and attentiveness to individual preferences, as reported by survey participants, are significantly associated with self-reported outcomes such as perceived control over life decisions and sense of health and well-being. Controlling for participants' experiences with their CMs, their reports of the person-centred content of their service plans have net positive associations with outcomes. After accounting for experiences with the service system as reported by participants, the state system's person-centred orientation, measured by the extent to which service plans across the state reflect participants' wishes for improving their social connections, remains a significant predictor of participants' sense of control over their daily lives. CONCLUSIONS: This study contributes to the evidence base supporting PCP as a service model by identifying pathways that link person-centred service planning and delivery and person-centred orientation of state systems to positive outcomes reported by adults with IDD and by demonstrating the value of linking survey and administrative data. The key implication of the findings for policy and practice is that an overall person-centred orientation of state DD systems as well as PCP training for people who support planning for and delivery of direct supports will substantially improve the lives of adults with IDD.
Journal of intellectual disability research : JIDR, 2023 · doi:10.1111/jir.13015