The profoundly disabled make up roughly four percent of our population in the United States. That equates to approximately 6.5 million people (UNHID, 2014). Many of them cannot speak and/or walk. They depend on people for every aspect of their care and to give them a quality, meaningful life. While direct support professionals often get into the field because they have a family member or personal connection to disabilities, many of them end up treating adults with profound disabilities like children. It is not because they do not care about the people they serve, and the intentions behind the infantilization is not one of malice or disrespect. However, this kind of treatment is rampant in nonprofit organizations and care providers/homes alike.
Infantilization of the profoundly disabled is a problem that many direct support professionals do not even realize they are engaging in. It can be something as innocent as telling someone how cute they are, to coming up behind a wheelchair and pushing it into another room without asking the person if you can push them, or move them (Farinas & Farinas, 2015). According to the Merriam-Webster online dictionary, infantilization is defined as: “to make or keep infantile”, and “to treat as if infantile”. As our understanding of how to work with people with profound disabilities evolves we must ensure that the people doing the work on the frontlines are trained and given the tools they need to continue the evolution and progress. In California, the change must come from the top down. The California regional center system must require nonprofit organizations and care providers to provide training on infantilization and how to effectively implement support techniques that give adults with profound disabilities dignity and respectful support that treats them like the adults they are (Vorhaus, n.d).
The purpose of this qualitative study is to understand the experience of direct support professionals in day programs that work with the profoundly disabled. This research is necessary to the evolution of our understanding of how to work with the profoundly disabled. In order to understand this phenomena from the direct support professionals perspective qualitative research methods are appropriate because we need to interview direct support professionals to see how people feel about their jobs and how they perceive the scope of their duties. In this study, we want to understand why some direct support professionals treat their profoundly disabled clients like children. The direct support professional has an understanding of how they do their job and how other direct support professionals do their job. It is important to find out what the direct support professional believes is an act of infantilization and if they believe that they are engaging in it while working, and also if they believe other direct support professionals engage in infantilization of the clients they work with. The setting in this case would be a day program for profoundly intellectually disabled adults as this is one of the places that infantilization of adults with profound intellectual disabilities is taking place. I am a program manager at United Cerebral Palsy, Inc. I manage a day program for sixty profoundly intellectually disabled adults with a staff of 18 direct support professionals. My relationship to the problem is my direct observation of direct support professionals at my day program in their daily work with profoundly intellectually disabled clients. The issues of bias that I can acknowledge is that I have seen several of the direct support professionals in my day program engage in infantilization of the clients. This could lead me to assume that this phenomena is happening in all day programs. The setting would be my day program, as well as three to four other day programs in the Sacramento area that work with profoundly intellectually disabled adults. Possible sources of data would be direct support professionals, managers of other day programs, families of clients, as well as the clients themselves.
What is the understanding of direct support professionals working with profoundly intellectually disabled adults in day programs with regard to infantilization, and are they aware of when or if they are engaging in this kind of treatment?
This study has the potential to create social change in the field of developmental and intellectual disabilities because of the impact it will have on the way that services are delivered to people with profound disabilities. Organizations that employ direct support professionals can use the findings in this study to retrain their employees to ensure that the staff are not infantilizing the clients they serve. Some organizations may not even realize their staff are engaging in infantilization, this study could potentially enlighten those organizations and lead to improved services for the people they serve. People with profound disabilities deserve to be treated with respect and dignity, specifically at programs where they spend a large percentage of their lives. This study seeks to improve the services people with disabilities receive by bringing infantilization into the spotlight and opening a discussion on how it impacts the ability of the direct support professional to provide services with the greatest level of respect and dignity.
The common themes in this study are:
Part 4: Trustworthiness and Summary
- Direct support professional’s dissatisfaction with the level of training on infantilization by their organizations and managers
- The lack of the direct support professional’s knowledge on the subject of infantilization
- The direct support professional’s desire to provide the best quality services for profoundly disabled adults
- The direct support professional’s high level of compassion towards the people they serve
- The commitment the direct support professional has toward learning new
Trustworthiness—summarize across the different data sources and respond to the following:
What themes are in common?
What sources have different themes?
Explain the trustworthiness of your findings, in terms of:
Based on the results of your analyses, how would you answer the question: “What is the meaning of social change for Walden graduate students?”
Self-Reflection—Has your own understanding of you as a positive social change agent changed? Explain your reasoning.
Based on your review of the three articles on social change, which one is aligned with your interests regarding social change and why?
Farinas, Cr. & Farinas, Ca. (December 15, 2015). Don’t Call My Sister ‘Cute’ – 6 Good Reasons to Stop Infantilizing Disabled People. Retrieved from: http://everydayfeminism.com/2015/12/infantalizing-disabled-people/
This article is crucial to understanding why the intellectually disabled do not want to be treated like children from their point of view. It also gives us a list of reasons why an intellectually disabled adult does not want to be infantilized and how we may be engaging in it without even realizing it.
Robey, K. L., Beckley, L., & Kirschner, M. (2016). Implicit Infantilizing Attitudes About Disability. Journal Of Developmental & Physical Disabilities, 18(4), 441-453. doi:10.1007/s10882-006-9027-3
This study is important to deepen our understanding of how people’s attitudes vary regarding disability and the various types and leves of disability. It also gives us a look at how people infantilize implicitly through the way they interact or speak to people with various disabilities.
Stevenson, J., Harp, B., & Gernsbacher, M. A. (2011). Infantilizing Autism. Disability Studies Quarterly, 31(3) online. Retrieved from: http://dsq-sds.org/article/view/1675/1596
This is another study focusing on one specific disability: Autism. This study gives us a look into how people infantilize people with autism, and it looks at the phenomena from the birth into adulthood and how infantilization impact development throughout the years.
Vorhaus, J. (n.d). Respecting profoundly disabled learners. Journal Of Philosophy Of Education, 40(3), 313-328. Retrieved from: Walden University Library Database
This study gives us a look at incorporating respect and dignity for people with profound disabilities in a school or educational setting. Since adult day programs incorporate many aspects of educational curriculum, looking at this phenomena in an educational setting and learning the ways that they have found successfully incorporate respect into the classroom would help to understand what solutions are needed for day programs that engage in infantilization of their clients.
University of New Hampshire: Institute on Disability (UNHID). (2014). Annual Report from the Disability Statistics & Demographics Rehabilitation Research & Training Center. Retrieved from: http://www.disabilitycompendium.org/docs/default-source/2014-compendium/annual-report.pdf
This study gives us the raw data on disability statistics so as to understand how many people this phenomena could possibly affect.
This reference was necessary to explain the definition of infantilization
Click following link to download this document
Reflections on Qualitative Research for Social Change.docx