Quality of Life Outcomes in Adult Service Settings

Quality of life (QoL) is a framework for considering what it means for a person to live a meaningful and fulfilling life. For individuals with Intellectual and Developmental Disabilities (ID/DD) supported in the adult human services, successful outcomes should extend beyond the reduction of challenging behavior, completion of daily routines, or acquisition of new skills. While these outcomes are important, they are not the only metrics that should be looked at. The quality of services should also be reflected in the opportunities and supports that enable individuals to achieve outcomes that are personally meaningful to them, not solely those guided by what a clinician or provider believes is “best” for the person. 

The concept of QoL is multidimensional, meaning that a person’s life is shaped by multiple interconnected areas rather than by any single outcome (Umb-Carlsson & Lindstedt, 2011). For example, someone may be physically safe and have their basic needs met, but does that alone indicate a high quality of life and satisfaction? Is their autonomy supported? Do they have meaningful relationships? How often are they accessing and participating in their community rather than remaining within the four walls of their home, even if preferred leisure activities are readily available? These questions are also reflected within Massachusetts Department of Developmental Services (DDS) Licensure and Certification, which looks beyond meeting basic required standards and safeguards to consider whether supports contribute to meaningful outcomes in individuals’ everyday lives. 

For behavior analysts working in adult services, QoL provides an important lens through which we can evaluate the social significance of our work. Our responsibility extends beyond reducing challenging behavior or increasing skill acquisition,  we should also consider whether the outcomes we target meaningfully improve the lives of the individuals we support. This requires us to ask whether our interventions increase opportunities for choice and self-determination, strengthen relationships, expand meaningful community participation, and support health and safety without unnecessarily restricting autonomy. Self-determination and QoL are closely connected, with individualized support and opportunities for choice-making, goal setting, self-advocacy, and personal growth identified as strategies for enhancing QoL. For behavior analysts, this means looking beyond whether an intervention is effective and asking an equally important question: Does this intervention help this person live a meaningful life? How does the person self-perceive their quality of life and how much of their own needs are being met? 

In order to understand what quality of life encompasses there are  four key areas that provide a useful lens for considering these outcomes: 1) choice, control, and growth; 2) supporting and enhancing relationships; 3) community access; and 4) health and safety. 

Choice, Control, and Growth

Choice and control are fundamental components of quality of life. Meaningful choice extends beyond deciding what to eat for dinner or selecting between two activities.Those can be seen as day to day decisions we all encounter. However, it should  include  having a voice in both everyday decisions and larger life choices such as, where and with whom to live, how to spend time, where to work, which relationships to pursue, and what personal goals are important. Research on self-determination emphasizes that choice-making, decision-making, goal setting, risk-taking, self-advocacy, and self-management are important strategies for enhancing QoL.

 Control means having opportunities to direct one’s own life rather than simply participating in decisions that have already been made by others. This may require us as providers to examine how our own practices influence autonomy. Are we presenting genuine choices, or choices within parameters we have already determined? Are individuals supported to make decisions that we may not necessarily agree with? Supporting control also means recognizing the dignity of risk and balancing our responsibility to provide support with an individual’s right to make decisions and experience the natural outcomes of those decisions.  This may mean that a choice is made that does not have the best long term implications to the person. However, the dignity of risk demonstrates that the ability to make a choice whether it is ultimately the correct one is what is significant and important to remember.

Growth is equally individualized. For one person, growth may mean learning a new independent living skill or obtaining employment. For another, it may include volunteering, developing a new hobby, advocating for themselves, spending more time doing activities they enjoy, or working toward a personally selected goal. QoL is enhanced when environments provide opportunities for individuals to exercise self-determination, rather than limiting those opportunities based on disability or support needs. Ultimately, our role is not to decide what a meaningful life should look like for someone, but to create opportunities and provide the support necessary for individuals to have greater choice, control, and opportunities for growth in their own lives (Mumbardo-Adam, Vicente, & Balboni, 2023). That is also to say that we look to the person whose life it is and their input is what is used to determine if the environment and resources that are present are sufficient to produce a high quality of life for them. 

Supporting and Enhancing Relationships

Meaningful relationships are an essential component of QoL, contributing to emotional well-being, social connection, and a sense of belonging. Relationships may include connections with family members, friends, romantic partners, neighbors, coworkers, and other members of the community. Research on QoL from the perspective of adults with ID/DD identifies social belonging as an important component of a good life, reinforcing that connection to others is not simply an added benefit of services but a meaningful outcome in itself. Supporting relationships requires more than providing opportunities for social interaction which is often prescribed and made by the practitioner and staff. Being around other people does not necessarily translate into friendship, connection, or belonging. Research on social inclusion emphasizes that measures such as the frequency of social contacts or community activities provide an incomplete picture unless the individual’s preferences and subjective experience of belonging are also considered. Likewise, many individuals may not be afforded opportunities to have access to romantic relationships which directly is linked to dissatisfaction in that part of their quality of life  Our support should focus on maintaining existing family and friendship connections while also creating opportunities for individuals to develop new, meaningful, and reciprocal relationships based on their own interests and preferences (Fulton, Kinnear, & Jahoda, 2021). 

For staff and providers, this means recognizing our role as facilitators of relationships rather than replacements for them. Paid staff may be an important and valued part of an individual’s life, but services should also create opportunities to develop and maintain natural supports that can exist outside of the service system. Ultimately, relationships should be viewed as a QoL outcome in their own right. The goal is not simply for people to be surrounded by others, but to have opportunities to feel connected, valued, and feeling of belonging to a community.

Community Access

Community access is more than simply leaving the home or being physically present in the community. Meaningful community participation occurs when individuals have opportunities to engage in activities, places, and experiences that reflect their personal interests, preferences, and values. Research on social inclusion highlights an important distinction between community presence and true belonging. Simply increasing the number of community outings may result in physical presence without necessarily creating meaningful participation or connection (Fulton, Kinnear, & Jahoda, 2021). Community experiences should therefore be individualized rather than approached as one-size-fits-all. Going to the same restaurant, shopping center, or recreational activity as a group may provide community access, but does the activity hold meaning for each person participating? Meaningful access might involve joining a local club, volunteering, attending a fitness class, visiting a favorite coffee shop, participating in a faith community, or simply becoming a familiar face in a neighborhood space. QoL frameworks similarly identify going places in the community, attending community events, accessing meaningful work, and participating in community life as important indicators of community belonging.

As providers, the goal should be to create opportunities that move individuals from presence to participation, and ultimately, connection. Community participation can support independence and inclusion, but also creates opportunities for individuals to develop valued social roles and a genuine sense of belonging. As stated in  Milner & Kelly (2009), belonging is not simply about where people participate, but how they participate.

Health and Safety

Health and safety are foundational to quality of life, but being safe is not the same as having a good quality of life but is a prerequisite. That is to say someone needs to feel safe to have a quality of life, but safety alone does not ensure a quality of life. Supporting safety should not unnecessarily limit an individual’s autonomy, choice, or opportunities for meaningful experiences.  QoL research with adults with ID/DD identifies personal safety as an important component of well-being, while also identifying control over one’s life and social belonging as essential components. This highlights the importance of balancing our responsibility to protect individuals from harm with their right to exercise autonomy and experience dignity of risk. Promoting health and safety should also extend beyond responding to illness, incidents, or challenging behavior. Supports can proactively enhance QoL through access to preventive healthcare, opportunities for physical activity, attention to mental and emotional wellness, and individualized supports that allow people to participate as fully as possible in their lives. Importantly, safety should be a foundation that makes greater independence and participation possible, not a reason to automatically restrict them. The goal is not to eliminate every possible risk, but to thoughtfully support individuals in living healthy, safe, and meaningful lives (Umb-Carlsson & Lindstedt, 2011; Friedman, 2026)

Why Should This Matter to Behavior Analysts?

For behavior analysts working in adult services, QoL provides an important lens through which we can evaluate the social significance of our work. Behavior analysts are often called upon to reduce challenging behavior, teach adaptive skills, increase independence, and develop supports that improve an individual’s ability to navigate their environment. While these are important, behavior change alone does not necessarily indicate that an individual’s life has improved. We should also consider what made that behavior change possible for the person. Does a reduction in challenging behavior lead to greater access to the community, stronger relationships, or increased independence? Does teaching a new skill provide the individual with greater choice or control? Are the goals we select meaningful to the person receiving services, or are they primarily important to those providing the services?

This is where social validity becomes particularly important. Behavior analysts should consider not only whether an intervention is effective, but whether the goals, procedures, and outcomes are meaningful and acceptable to the individual. This requires looking beyond what we can easily measure and considering the broader impact of our interventions on the person’s everyday life. An intervention may successfully reduce the frequency of a behavior, but if doing so does not increase access to meaningful activities, relationships, autonomy, or other personal values, we should question what meaningful improvement has actually occurred. Skill acquisition should not simply result in a longer list of mastered objectives; those skills should help individuals access experiences and outcomes that matter to them.

Ultimately, incorporating QoL into behavior-analytic practice asks us to broaden how we define a successful outcome. Our clinical expertise gives us tools to understand behavior and develop effective support, but it does not mean that we should determine what a “good life” looks like for another person. Behavior change is most meaningful when it creates greater opportunities for the individual to live the life they want to live. Rather than only asking, “Is this intervention effective?” we should question, “Does this intervention help this person live a meaningful life?”

References

Friedman, C. (2026). Disparities in quality of life outcomes and quality of supports among people with disabilities who receive home- and community-based services (HCBS). Journal of Developmental and Physical Disabilities, 38, 563-581. https://doi.org/10.1007/s10882-025-10035-7  

Fulton, L., Kinnear, D., & Jahoda, A. (2021). Belonging and reciprocity amongst people with intellectual disabilities: A systematic methodological review. Journal of Applied Research in Intellectual Disabilities, 34(4), 1008-1025 https://doi.org/10.1111/jar.12881 

Milner, P., & Kelly, B. (2009). Community participation and inclusion: People with disabilities defining their place. Disability & Society, 24(1), 47–62. https://doi.org/10.1080/09687590802535410     

Mumbardo-Adam, C., Vicente, E., & Balboni, G. (2024). Self-determination and quality of life of people with intellectual and developmental disabilities: Past, present and future of close research paths. Journal of Policy and Practice in Intellectual Disabilities, 21(1), 1-6. https://doi.org/10.1111/jppi.12460 

Umb-Carlsson, O., & Lindstedt, H. (2011). The prerequisites for QoL of people with intellectual disabilities. Scandinavian Journal of Disability Research, 13(4), 241-253. https://doi.org/10.1080/15017419.2010.490729