Written by Paul J. Waga, MPP, MEd, BCBA, and Ashley M. Benedetto, MSEd, BCBA
Melmark Inc.
Rita Gardner with Peter and his brothers.
Image provided by Melmark and used with permission.
This is an important question. But before we can discuss Quality of Life Indicators, we must first define what we mean when we say Quality of Life, or QoL in this context. QoL has been defined by The World Health Organization’s terms “as an individual’s perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” (Mason et al., 2018, p. 1138). Therefore, in this article, we explore QoL indicators in individuals with intellectual and developmental disabilities, which includes discussions about the quality of relationships, community inclusion and access, overall health, safety, self-advocacy, individualized supports, and meaningful, fulfilling lifestyles they engage in and have access to. Implications for practice and advocacy are also discussed.
Autism Spectrum Disorder (ASD) is commonly referred to as autism. The core features of autism include difficulty with or impaired communication, difficulty with or impaired reciprocal social interaction and restricted repetitive or stereotyped patterns of behaviors which may include specific interests and sensory behaviors (APA, 2013). Co-occurring difficulties and disorders such as speech and language delays, fine and motor challenges, epilepsy, sleep deprivation, anxiety, obsessive compulsive disorder (OCD), attention deficit/ hyperactivity disorder (ADHD) etc. collectively contribute to autism severity and is different in everyone diagnosed with autism (Lord et al., 2020). The National Research Council (2001) notes that 80% of individuals diagnosed with autism also exhibit an intellectual disability, although more recent estimates are a bit lower (40-70%; Thurm et al., 2019).
The World Health Organization estimates that 1 in 100 people worldwide have autism (WHO, 2023). Although it may be presumed that the rate of autism is increasing, studies have found that this might not be the case; instead, the rate is not increasing but rather, there is increased diagnosis and documentation of diagnosis (Lord et al., 2020). Studies have also shown that autism in adults has typically gone undiagnosed; current diagnosis relies on childhood developmental data, which may not be reliable or may be unavailable for most adults. It has been suggested by many that a comprehensive diagnostic tool and assessment for adults should therefore be considered a research priority (e.g., Lord et al., 2020; National Research Council, 2001). Clinical needs are also paramount; services are lacking and there are concerns about the living circumstances and vocational outcomes that most adults with autism experience.
Complicating the picture further is the disparity between the quantity of research on children with autism vs. adults with autism. Much more attention has been given to the needs of and the treatments for children on the spectrum. Existing adult research studies often describe interventions with small samples of adults diagnosed with high functioning autism which makes it difficult for results to be generalized to a larger population within the autism spectrum (Mason et al., 2018); in particular, limited research focuses on individuals more severely impacted by autism, often described as having profound autism, even though these individuals typically have significantly greater support needs.
For all individuals on the spectrum, but especially for those who are more significantly impacted by their disability, QoL remains a complex concept with various definitions and a broad umbrella of domains which can be described in both subjective and objective terms. Objective measures describe concrete life aspects that may include employment status, living conditions and social relations, and the presence of friends. Subjective measures are individualized and may include personal measures of satisfaction as perceived by the individual living with autism and other stakeholders such as family members, caregivers etc. (Smith et al., 2019).
With such limited scope in research studies focused on adults with autism, it is difficult to identify best practices for assessing and intervening with adults on the spectrum, as well as assessing quality of life. Furthermore, , few resources exist clinically to ensure that goals are meaningful and that ultimate outcomes are considered in the selection of goals. In addition, a number of authors have highlighted the need to examine the extent to which our approaches are humane, compassionate, and focused on upholding the dignity of those we serve (Smith et al., 2019; Melton et al., 2023).
Each of these emphases (e.g., compassion, meaningful goals) are consistent with an emphasis on quality of life. As noted above, the focus on QoL is broad, and encompasses many different elements of an individual’s daily experience. As it does for all humans, quality of life for individuals with autism requires a broad lens of analysis, including parameters such as safety, happiness, access to and engagement in the community, social connection, meaningful work, physical health, and recreational opportunities (Smith et al., 2019).
As a parent or caregiver of an individual with autism, it may be difficult to assess these concepts and parameters. How can one know if their loved one is happy, engaged, feeling safe, and supported? The following list of questions might help a parent, their loved one and a loved one’s team identify elements of quality of life on an individual level. With a heightened awareness of QoL, these questions may help guide the team and the autistic individual in tailoring activities, schedules, and other elements of programming to their needs and preferences.
Quality of Life Measures
Choice Making
Giving individuals control over their daily decisions can greatly enhance their quality of life. Choices can include daily routines, such as mealtimes and activities, as well as more significant decisions like where to live or what job to pursue. Choice making reduces power struggles and stress. Additionally, choice making promotes independence and provides a sense of purpose (Dean et al., 2021). In evaluating the extent to which an individual has choices, consider contexts in which choice may or may not be embedded. See Table 1 for sample questions to ask regarding choice-making.
Table 1.
| Questions to Ask About Meaningful Choices |
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Few real barriers have been identified that would preclude the use of choice making when developing care plans. Still, cited barriers noted include convenience of family members or service providers. It is easier and less time-consuming to make choices for our loved ones, compared to having them choose themselves. There is a perception that it is in the best interest of the individual receiving support not to make choices for their own safety. The skill level of an individual supported can also contribute to decreased opportunities for choice making. It is therefore important to be aware of the above barriers and their impact on day-to-day choice making for your loved one (Petner-Arrey, 2011).
Empowering your loved one is another aspect that needs to be addressed while offering choice making. Empowerment allows for choice and control and should be offered through support, education and skill acquisition. Empowerment calls for caregivers giving up some control, being flexible, accepting uncertainty, and risk taking. Risk taking does not mean allowing your loved one to get hurt in the process but instead allows you an opportunity to help your loved one understand the risks while providing skills and support needed to face the risks involved (Dean et al., 2021). It requires an active balancing of allowing some risk while also working to protect them.
Assertiveness in communication allows an individual to stand up for their own choices, desires and rights. It is the ability to say no and express one’s opinions, feelings and the right to change course in a previously made decision (Petner-Arrey, 2011). It is imperative that individuals be taught to assert their opinion and preference, that they are taught to protest, and that their protests are honored. While some things in everyday life are non-negotiable, many elements of daily life are indeed flexible. This sensitivity needs to be embedded into caretaking; an individual’s rights should be preserved by soliciting their opinions, honoring their preferences, and teaching them how to set limits and ensure safety with others.
Where do we start with choice making? One possible course of action is to begin with an assessment of your loved one’s abilities. This can be initiated through a person-centered planning of services. Person Centered Planning allows your loved one’s team to plan supports that are individualized in a manner that considers their abilities, preferences, likes, dislikes, communication needs, and skills all geared to independent choice making (Dean et al., 2021; William & The Minnesota Governor’s Council, 2019). Then, the team should discuss the questions posed above regarding choice making to ensure maximum choice, empowerment and assertiveness are prioritized for the benefit of your loved one. Overall, the proposed plan should consider teaching independent choice-making to the extent your loved one displays skill deficits in this important area.
Meaningful Connections
Healthy human connections impact QoL. While social participation encompasses the size and quality of social networks, friendship encompasses relationships that have an emotional meaning for both individuals and is mainly characterized by mutual affection and companionship that is reciprocal in nature (Chan et al., 2023). Individuals receiving support and services have historically had a decreased circle of friends and connections. In some cases, this circle of friends is limited to family members, other individuals they attend school or day programs with, and paid support staff. Based on the above definition of social networks and friendship, the connections that individuals receive support and services have been inadequate. In addition, paid support staff are required to always maintain professional boundaries which shifts the client – staff relationship into a different category. A variety of networks of friends, which could include family members, neighbors, romantic partners, and community connections, have been determined to positively impact one’s health, promote a sense of purpose, reduce stress, and promote a long life. (Chan et al., 2023). It is therefore important to think of ways to enlarge the circle of friends and connections for individuals receiving services in a way that is geared to making meaningful friendships and connections with others in the community, as well as promoting citizenship in their respective community.
Friends can step in and support various outings, volunteer activities, hobbies, support groups, religious beliefs and practices, the exploration of new experiences, and many other activities that impact one’s quality of life. Additionally, such a network of friends has the potential to create an opportunity for your loved one to be involved in other activities of their liking while building various connections. These connections may help build an individual’s identity while promoting self-esteem from being part of a larger community (Chan et al., 2023). See Table 2 for a list of questions to ask about developing connections that are meaningful.
Table 2.
| Questions to Ask About Meaningful Connections |
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Where do we start with building meaningful relationships and networks? One course of action is to begin with an assessment of your loved one’s current network. An assessment can be initiated through a person-centered planning of services. This allows your loved one’s team to plan supports that are individualized to their abilities, preferences, likes, dislikes, communication needs, etc. (Dean et al., 2021; William & The Minnesota Governor’s Council, 2019). For some individuals, it may be possible to promote online and social networking experiences; these can be implemented as part of an individualized systematic plan to support building and broadening meaningful friendship and connections for your loved one while expanding their activities (Chan et al., 2023). Of course, individuals with disabilities are also at risk of exploitation, and safety is of paramount concern in broadening the connection network. Online safety is a concern, and safety skills should be taught to ensure that the individual can navigate any unsafe context. See Table 3 for some suggestions on building social connections
Table 3.
| Resources for Building Social Networks |
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Communication
Communication is an important part of QoL as it helps us express our needs among other things. How we approach communication depends on an individual’s communication skill and mode. Some individuals communicate clearly through speech, others use sign language, communication devices, gestures or behaviors etc. It is important to allow the person enough time to think, process the information, and respond accordingly (Reichle et al., 2023).
It can be a difficult process to establish an optimal communication system. An effective communication system allows an individual to maintain control over decisions affecting their lives. It is estimated that over 50% of individuals with autism do not communicate verbally (Hyman et al., 2020; Reichle et al., 2023). Additionally, the use of gestures and eye gaze for communication purposes are both low in individuals on the spectrum. Individuals without a communication system may rely on socially unacceptable ways of communication to express their needs, some with the potential to cause harm to themselves and others (Reichle et al., 2023).
Where do you start when building a communication system for your loved one? One course of action is to begin with an evaluation of your loved one’s expressive communication abilities. People who closely interact with your loved one may be able to offer valuable information during the evaluation. If possible, seek the services of a Speech Language Pathologist (SLP). The evaluation will proceed with the development of a functional communication program based on your loved one’s abilities and needs (Hyman et al., 2020). The plan should include the development of both a long-term plan as well as determining day- to- day communication needs. Although the process of coming up with a communication system may be long, the benefits greatly impact an individual’s independence of communicating their needs and wants (Reichle et al., 2023).
It is important that all team members believe the individual has the potential to learn. Additionally, it is important that all team members, including family and siblings, are united in their understanding of the communication system put in place and are following it accordingly. This will ensure that everyone is united in their approach and are reinforcing the use of the communication system in place in all settings. Lastly, in the event an individual transfers or transitions to another setting, the expectations related to the communication system need to transfer with them. Table 4 provides some areas to consider for communication skill development.
Table 4.
| Questions to Ask About Communication |
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Good Health
Individuals with autism and other disabilities benefit from staying active, being engaged in their communities, and participating in their health care (Centers for Disease Control and Prevention 2020). Health programs include regular health checkups, physical activity, and overall body nourishment (Centers for Disease Control and Prevention 2020). Good Health, because of health assessments, is a QoL Indicator. At minimum, an annual health examination, which takes your loved one’s age into consideration, should be completed (Centers for Disease Control and Prevention 2020).
Additionally, it is important to note that all federal and state-based disability health programs and funding are created and informed through policy and practice. For this reason, it is vital that advocacy from the individual’s team members to their elected policy makers is on-going to ensure adequate funding is allocated to such programs. This will in turn ensure that individuals with autism and disabilities are included in disease prevention and health and wellness initiatives (Centers for Disease Control and Prevention 2020). Table 5 shows a sample of areas to consider in promoting your loved one’s health.
Table 5.
| Questions to Ask About Health |
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Transition Planning
Transition Planning is an intentional, organized and coordinated process of guiding individuals with autism and other disabilities through significant life changes (U.S. Department of Education, 2020). Transitions include but are not limited to moving from childhood to adulthood while preparing and gaining knowledge and skills for post-secondary education all the way to the workforce. Additional examples of common transitions include moving from the family home to residential care, adjusting to different job contexts or to changed levels of support for employment, and changes in care levels within residential supports. For individuals with autism and other disabilities, transitions can be challenging. Successful transition planning can increase the individual’s adaptation and fulfillment (U.S. Department of Education, 2020). The individual and their support team need to plan for transitions and for the support needed. Support in transition planning includes planning for the desired outcome through a coordinated set of activities. This process should involve the individual supported, as mandated by many national/federal and state/provincial/regional bodies (e.g., the Individuals with Disabilities Education Act (IDEA) of 2004; U.S. Department of Education, 2020). All the needs related to maintaining and enhancing QoL should be captured in an individual’s Transition Planning process.
Transition planning is geared towards ensuring your loved one is set up for a successful and meaningful life through those significant life changes and goes beyond the age of 21 years. It is a lifelong process to ensure adequate support and meaningful engagement. The table below shows a sample of critical areas to consider in a transition planning process for your loved one (U.S. Department of Education, 2020). See Table 6 for a summary of some questions to review for effective transition planning.
Table 6.
| Transition Planning Process |
| Has your loved one completed a transition assessment? |
| Has your loved one completed other assessments related to training, education, employment, and independent living such as: |
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| What is the current level of family engagement in the transition plan? |
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| What are the current plans for your loved one’s academic preparation? Are they interested in pursuing: |
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| Does your loved one have an IEP in place with quality and socially significant IEP appropriate and measurable outcomes? |
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| What are your loved one’s plans for post-secondary education and training? |
| Are there any future career exploration and employment experiences such as: |
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| What is the involvement of others including interagency collaboration? Educational or adult educational agencies? State and Vocational Rehabilitation? Residential service providers? Supported employment representatives? |
Community Inclusion/Access
Being a part of a community and having access to community significantly affects quality of life. Community inclusion embraces participation in community activities, access to services, and feeling included in the community. Being a part of a community not only enhances a sense of belonging and self-worth but also provides opportunities for social interaction, personal growth, and engagement in meaningful activities. Some key factors to evaluate are preferences, accessibility, and inclusion. See Table 7 for a summary of community involvement considerations.
Table 7.
| Questions to Ask About Community Inclusion/Access |
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Key Elements of QoL
We have focused on a few elements of QoL that are associated with best practices: These include supports and services to foster meaningful connections, communication, choice making, healthy programs, and smooth transition planning. These are important for any person but are especially relevant for those with disabilities. They add joy, engagement, and autonomy to the individual’s life maximizing their agency and involvement in their life experiences. It is important to note that QoL is not static; needs and preferences change, and life circumstances can alter what is needed and what is valued. Below is a Case Study that illustrates many of the strategies and themes involved in focusing on QoL in intervention.
Case Study
The indicators for QoL change as an individual’s needs change. This change can be from a variety of factors, such as family support, medical issues, and age. Gavin is an individual diagnosed with Down Syndrome and an Intellectual disability. Gavin experienced quality care and planning throughout all stages of his life. This looked very different as he and his parents/caregivers aged. Post 21, Gavin was employed at a local restaurant. He had many of the above – mentioned indicators at his workplace as well as through friend groups. His parents were very involved and were able to support his transportation needs to meet his choice making and meaningful connection indicators. When Gavin reached his 40’s, his family found themselves needing more support to maintain his quality of life. They were no longer able to support the transportation his activities required, given their own health needs. His family, with Gavin’s support, was able to get him into a residential service provider that was close to their home. This enabled Gavin’s QoL indicators to continue to be met and improved the family’s quality of life. Gavin’s residential provider was able to take on some of the transportation needs and continue to support his active social life. He was enrolled in an Adult Day program at this time too, and this grew his social network even more. He was able to walk to and from the day program by himself, increasing his independence and choice-making ability. Gavin was diagnosed with dementia in his early 50’s and this again drastically changed the indicators. The primary indicators were modified from meaningful connections and access to community to physical health and safety. He moved into a home that was accessible in preparation for the continued decline in his cognitive functioning. Gavin’s dementia progressed quickly, and he required total care assistance. Being in a group home provided the care and support that was needed and one that his family was unable to sustain alone. While living quietly at home, every effort was made to keep him connected to the people he was close to and to provide him with engaging activities as he was able to participate in. Much was done within the home to celebrate memories of him and continue to brighten his days. His family members remained frequent visitors, and this was important to Gavin, his parents, and family as well as his support staff.
Summary
Quality of life is a consideration for all people, including those with autism intellectual disabilities. It can be difficult to gauge the quality of life for those with disabilities, but it is essential to do so. As in other assessments of QoL, a broad analysis of the individual’s level of choice and control is warranted. Actively seeking information about the extent to which choice is embedded is essential. In addition, a comprehensive analysis of different parameters of happiness must be completed, and should include social connections, community integration, and the presence of friends, as well as more concrete elements such as employment status, health status, and living arrangements. Caregivers and family members must ask new questions and ensure that QoL is prioritized in the provision of service. Finally, quality of life is evolving and ever-changing; a continuous assessment is warranted, and major changes in medical or social status should also warrant an assessment of QoL indicators.
References
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Chan, D. V., Doran, J. D., & Galobardi, O. D. (2023). Beyond friendship: The spectrum of social participation of autistic adults. Journal of Autism and Developmental Disorders, 53(1), 424-437. https://doi.org/10.1007/s10803-022-05441-1
Dean, E. E., Kirby, A.V., Hagiwara M., Shogren K. A., Ersan D.T., & Brown S. (2021). Family role in the development of self-determination for youth with intellectual and Developmental disabilities: A Scoping Review. Intellectual and Developmental Disabilities, 59(4), 315–334. https://doi.org/10.1352/1934-9556-59.4.315
Dinora, P., Bogenschutz, M., & Broda, M. (2020). Identifying predictors for enhanced outcomes for people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 58(2), 139-157. https://doi.org/10.1352/1934-9556-58.2.139
Henry, A. R. (2013). Barriers to accessing support services in employment and health care for adults with autism spectrum disorders: A qualitative study (Order No. 3609895). Available from Psychology Database. (1498563482). Retrieved from https://www.proquest.com/dissertations-theses/barriers-accessing-support-services-employment/docview/1498563482/se-2
Hyman, S. L., Levy, S. E., Myers, S. M., Kuo, D. Z., Apkon, S., Davidson, L. F., Ellerbeck, K.A., Foster, J. E., Noritz, G. H., Leppert, M. O., Saunders, B.S., Stille, C., Yin, L., Weitzman, C. C., Childers, D. O., Levine, J. M., Peralta-Carcelen, A. M., Poon, J. K., Smith, P. J., … Bridgemohan, C. (2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), e20193447. https://doi.org/10.1542/9781610024716-part01-ch002
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Smith, S. J., Powell, J. E., Summers, N., & Roulstone, S. (2019). Thinking differently? Autism and quality of life. Tizard Learning Disability Review, 24(2), 68-76. https://doi.org/10.1108/TLDR-05-2018-0014
Thurm, A., Farmer, C., Salzman, E., Lord, C. and Bishop, S. (2019) State of the field: Differentiating intellectual disability from Autism Spectrum Disorder. Frontiers in Psychiatry, 10:526. https://doi.org/10.3389/fpsyt.2019.00526
Szlamka, Z., Tekola, B., Hoekstra, R., & Hanlon, C. (2022). The role of advocacy and empowerment in shaping service development for families raising children with developmental disabilities. Health expectations: An International Journal of Public Participation in Health Care and Health Policy, 25(4), 1882–1891. https://doi.org/10.1111/hex.13539
U.S. Department of Education (Department), Office of Special Education and Rehabilitative Services, A Transition Guide to Postsecondary Education and Employment for Students and Youth with Disabilities, Washington, D.C., 2020. https://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-2020.pdf
William, T. A., & The Minnesota Governor’s Council on Developmental Disabilities. (2019). A guide for including choices in service plans. https://allenshea.com/wp-content/uploads/2019/02/Its-My-Choice.pdf.
Reference for this article:
Waga, P. J., & Benedetto, A. M. (2025). Clinical Corner: What are some quality of life indicators for adults with autism and intellectual disabilities? Science in Autism Treatment, 22(9).
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