By Carli Friedman, CQL Director of Research
Person-centered planning is a way to rethink how services and supports are delivered to ensure they focus on the wants and needs of the person with intellectual and developmental disabilities (IDD) receiving services. One critical aspect of person-centered planning is the person with IDD choosing their personal goals. While person-centered planning, including goal development, is important, there is less research about the impact it can have on people’s lives. For these reasons, the aim of this study was to examine the impact of people with IDD choosing their personal goals on their quality of life. To explore this, I analyzed Personal Outcome Measures® interviews from 2,928 people with IDD (from 2020-2024).
Between 2020 and 2024, only about half of people with IDD (54.0%) chose their personal goals. When people with IDD chose their personal goals, it had a widespread impact on their quality of life, increasing the likelihood of each of the 20 other outcomes being present, even when accounting for people’s demographics (see graph below). For example, regardless of their demographics, people with IDD who chose their personal goals were 2.09 times more likely to participate in the life of the community than people with IDD who did not choose their personal goals. From human security to community to relationships to other choices, it was all positively impacted by people choosing their own personal goals.
Quality of Life Outcomes When People Choose Their Personal Goals
In addition, I also examined if there were disparities in who was allowed to choose their personal goals. In doing so, I found people with IDD who also had ‘other’ psychiatric disabilities were 2.04 times less likely to choose their personal goals than people with IDD without ‘other’ psychiatric disabilities. People with IDD who communicated with verbal/spoken language were 1.53 times more likely to choose their personal goals than people with IDD who primarily communicated through other methods besides verbal/spoken language. Moreover, people with IDD who lived in ICFDD were 3.45 times less likely to choose their personal goals than people with IDD who lived in provider owned/operated homes; although, people with IDD who lived in their own homes, and in host homes/family foster care were both more likely (1.40 and 1.88 times respectively) to choose their personal goals than people with IDD who lived in provider owned/operated homes.
“Our findings suggest choosing personal goals is associated with people with IDD having a significantly better quality of life. However, despite the widespread use of person-centered planning, including its required use in HCBS, only 54.0% of people with IDD in this study chose their personal goals, meaning many people are working on goals they did not even get to choose… Brien et al. (1997) noted that there seems to be an ‘unspoken pressure to turn person-centered planning into one more way to change the person for his or her ‘own good’’ (p. 483). Almost thirty years after Brien et al.’s (1997) statement, and almost five decades since the introduction of person-centered planning, a significant proportion of the service system still operates in a compliance-based custodial model of care, with ‘provider-centered’ or ‘parent-centered’ plans and goals that people with IDD not only do not choose and may have no interest in… As such, significant cultural change is still needed to ensure human services are provided in a truly person-centered way. The theories underpinning person-centered planning have been around for decades; however, we must ensure they are actually implemented on the ground… Doing so will not only give people with IDD more control over their own lives but also improve their quality of life” (Friedman, 2026).
This article is a summary of the following journal manuscript: Friedman, C. (2026). Person-centered: The impact of people with IDD choosing their goals on their quality of life outcomes. Journal of Developmental and Physical Disabilities, advanced online publication. https://doi.org/10.1007/s10882-025-10048-2
References:
- Brien, C. L. O., O’Brien, J., & Mount, B. (1997). Person-centered planning has arrived or has it? Mental Retardation, 35(6), 480-484. https://doi.org/10.1352/0047-6765(1997)035<0480:PPHAOH>2.0.CO;2
- Friedman, C. (2026). Person-centered: The impact of people with IDD choosing their goals on their quality of life outcomes. Journal of Developmental and Physical Disabilities, advanced online publication. https://doi.org/10.1007/s10882-025-10048-2
Choosing Goals Is Extremely Beneficial, So Why Aren’t People Allowed to Choose?