Community-based living for people with intellectual and/or developmental disabilities (ID/DD) has improved since the mid-20th century, in the context of a broader civil rights movement. A more discrete focus on the rights of individuals with disabilities arose during the 1960s and 1970s under John F. Kennedy’s presidency after he passed the Community Mental Health Act (CMHA) in 1963. The purpose of the CMHA was to provide more accessible and comprehensive mental health services in community settings, rather than in large institutions. Due to lack of funding, the CMHA did not effectively launch, nor was it sustained with funding over the long term. While the CMHA did not have the intended impact on support for people with a variety of special needs, including disabilities, the act did begin the process of closing large, dehumanizing, and often isolated communities and providing access to those communities.
Another key development in moving toward community-based living was the passage of the Americans with Disabilities Act (ADA) (1990), which prohibits discrimination against people with disabilities in all areas of public life. In addition to well-known anti-discrimination policies (i.e., sex, race, religion, etc.) included in the legislation, the ADA also includes requirements that public accommodations must be accessible for folks with ID/DD. Examples of public accommodations include wheelchair accessible ramps near staircases and elevators, braille print on signage, and accessible restrooms. With the passage of the ADA, the movement to make public spaces fully accessible to people with disabilities gained momentum. Then, in 1999, the United States Supreme Court ruled in Olmstead v. L.C. that the segregation of individuals with disabilities in institution-like settings was unconstitutional and mandated that these individuals have the right to the least restrictive, most integrated housing. The Supreme Court’s decision set foundational precedents regarding community inclusion and participation for individuals with intellectual or developmental disabilities.
In the 26 years since the Olmstead decision and various funding changes, the number of people with ID/DD in institutions dropped significantly, with a majority transitioning to community-based housing. There is a large literature base which supports community-based living and its impact on the quality of life for individuals with ID/DD, including increased opportunities for choices (Bannerman, Sheldon, Sherman, & Harchik, 1990; Stancliffe et al., 2005), improved social skills and relationships with others (Amado et al., 2013), increased life satisfaction (Young et al., 2009), and increased community participation (National Core Indicators, 2023). The transition to community-based housing has been a monumental step forward in ensuring equal rights for people with ID/DD.
Our goal as caregivers is to support our individuals in the community environment and give them the opportunity to grow and flourish. Training staff in evidence-based practices that uphold these values and initiatives is imperative to ensuring that caregivers are able to provide the least restrictive and most inclusive support in the community. One of the most important trainings caregivers provide the individuals served is rooted in improving both the efficiency and clarity of communication. Often, people with ID/DD have deficits in communication, hindering their ability to communicate with others. The provider is responsible for teaching the person with ID/DD how to communicate their wants and needs effectively and appropriately, which is foundational to reducing challenging behavior and therefore enhancing independence (Carr & Durand, 1985; Tiger, Hanley, & Bruzek, 2008; Light & McNaughton, 2012). Due to these communication barriers, individuals with ID/DD may at times engage in challenging or disruptive behaviors such as yelling, tantrums, aggression, or self-injury. Caregivers are provided with additional training and support on how to best assist the person with ID/DD in these moments, prompting coping skills, communication, and ensuring safety of all involved.
When the individual served is at home or their day habilitation program, both the individual and caregiver are surrounded by other trained staff members in a familiar environment who can provide additional support, however, when in the broader community, different variables may arise that can present challenges to staff and the person being supported. In unfamiliar community settings like grocery stores, restaurants, or movie theaters, various sounds, smells, items, and people can contribute to sensory overload. All of these changes, combined with caregivers having access to a smaller pool of supporting staff, can factor in if an individual exhibits disruptive behavior in the community. Public reaction affects the individual’s safety and dignity and has a significant impact on staff’s comfort by accessing the community with individuals.
These reactions are often shaped by the visibility of disability, societal stigma, cultural attitudes, and a general lack of awareness about developmental disabilities (Gray, 2002; NCD, 2015). One factor that affects public perception is when the disability is not visibly apparent, leading to challenging behavior more likely to be misinterpreted. The visibility of a disability influences the public’s attitude toward that person. McCoy and Banks (2012) found that children with emotional or behavioral disabilities/ multiple disabilities are perceived more negatively than children with a physical disability. Further, children with ID/DD are perceived more negatively than children with a physical disability (Nowicki, 2006; de Laat et al., 2013).
When these behaviors occur in the individual’s home environment, trained direct support professionals (DSPs) are typically available to implement behavior support plans and assist the individual using evidence-based and functionally related practices. While in the community, a behavior can occur and people might think that the person is ‘violent’, suffering from substance abuse, etc., which can escalate the situation. In some cases, bystanders may call law enforcement, which introduces additional risk—particularly if the responding officers lack training in disability-specific de-escalation strategies (Ruderman Family Foundation, 2016; Perry & Carter, 2017). Such misunderstandings can cause harm to the individual, including the use of force (i.e. tasers) and could result in the individual being arrested and/or charges being pressed against them. This type of situation is not only extremely risky and harmful to the individual but also contributes to broader community fears and may reinforce ableist narratives about people with disabilities.
Federal legislative efforts over the last 35 years have been instrumental in ensuring that individuals with intellectual and developmental disabilities have equal opportunity and access to public accommodation, transportation, communication, and more, however the movement does not end there. Our role as providers is critical for not only the individuals we serve, but our highly skilled staff who provide compassionate care, and the broader community. Our goal is to ensure staff are adequately trained, and that the necessary support is provided within community settings so that the individuals we serve have full access to the community with the best outcomes. We continue to strive to positively impact the broader narrative about individuals with ID/DD in community settings by advocating for the rights of the individuals we serve and their families.
Christina DeLapp, MS, BCBA-LABA, is the Clinical Training Coordinator at Melmark.
References
Amado, A. N., Stancliffe, R. J., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 360–375.
Americans with Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 327 (1990).
Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990). Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many doughnuts and take a nap. Journal of Applied Behavior Analysis, 23(1), 79-89.
Carr, E. G., & Durand, V. M. (1985). Reducing behavior problems through functional communication training. Journal of Applied Behavior Analysis, 18(2), 111–126. https://doi.org/10.1901/jaba.1985.18-111
de Laat S., Freriksen E., Vervloed M. P. (2013). Attitudes of children and adolescents toward persons who are deaf, blind, paralyzed or intellectually disabled. Res. Dev. Dis. 34 855– 863. 10.1016/j.ridd.2012.11.004
Gray, D. E. (2002). ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6), 734–749. https://doi.org/10.1111/1467-9566.00316
Light, J., & McNaughton, D. (2012). Supporting the communication, language, and literacy development of children with complex communication needs: State of the science and future research priorities. Assistive Technology, 24(1), 34–44. https://doi.org/10.1080/10400435.2011.648717
McCoy, S., & Banks, J. (2012). Simply academic? Why children with special educational needs don’t like school. European Journal of Special Needs Education, 27(1), 81-97.
National Core Indicators. (2023). 2021-2022 NCI-IDD adult in-person survey national report. Human Services Research Institute & National Association of State Directors of Developmental Disabilities Services.
National Council on Disability. (2015). Breaking the school-to-prison pipeline for students with disabilities. Washington, DC. https://www.ncd.gov/assets/uploads/reports/2015/ncd_school-to-prison-pipeline.pdf
Olmstead v. L.C., 527 U.S. 581 (1999).
Nowicki E. A., Brown J., Stepien M. (2014). Children’s thoughts on the social exclusion of peers with intellectual or learning disabilities. J. Int. Dis. Res. 58 346–357. 10.1111/jir.12019
Perry, D. W., & Carter, C. B. (2017). The need for disability-specific law enforcement training. Journal of Disability Policy Studies, 28(3), 131–139. https://doi.org/10.1177/1044207317703281
Ruderman Family Foundation. (2016). The Ruderman white paper on media coverage of law enforcement use of force and disability. https://rudermanfoundation.org
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