Advocacy Activity
https://www.youtube.com/watch?v=EPJy4zvg4io
(DD Care Best Practices….) (Portico Network, 2015).
As I was researching and interviewing for this project, I expected to hear about the transition into the career world and was not surprised when I heard some of the struggles with normalizing intimate relationships for people with Intellectual and Developmental Disabilities (IDD). However, what I had no idea about was the discrepancy in proper healthcare for people with IDD. As mentioned in section 2 of this activity, there is a discrepancy in how medical staff cares for people with IDD and other disabilities, mostly because of the lack of educational training on equity (not equality) based treatment for people with disabilities. Another theme that has emerged is how common it is for people to assume those with IDD cannot speak for themselves. Because of general stereotypes of the severity of IDD, these people are not given the chance to speak for themselves in these situations. However, with something like bedside manner at a hospital or doctor’s office, this is exactly what they need to be able to do. Not only is medical care a more sensitive, personal thing, but this also leaves no room for cultural norms that may intersect.
Therefore, this is the plan that I have for advocacy. I would create a video or presentation (depending on whether people felt comfortable sharing in front of others), and propose it to the local nursing/medical programs in the area to be a part of one class session. The immediate ones I could think of included:
- Hondros College of Nursing
- OU Dublin Campus Med School Program
- Various 4-year school nursing programs (Otterbein, Capital etc)
- Mt Carmel Nursing Program
We would start with the first 2 or 3 that were interested in having us, and continue depending on our size and availability. The presentation would either include the video or volunteers explaining their thoughts of doctor care, a Think Pair Share over the following questions:
- Have you had experience working with patients with a disability?
- What about that experience is challenging for you?
- How do you think that patient would be perceiving the medical experience?
- What can you do to make that environment more comfortable for them?
And some guidelines on working with patients with IDD based on the testimonies shared at the beginning and the Think Pair Share dialogue. Total, this should take 20 minutes maximum but could be extended to a full class period. The ultimate goal of this activity would be for professors and schools to begin noticing the lack of education on this topic, and to ultimately be able to transform medical curriculum to make it inclusive of people with IDD. This would be a process though, and this advocacy activity would be the first step in building those relationships. The Multicultural and Social Justice Counseling Competencies speak to this transformative mode of advocacy as well, instead of seeking to just add a sprinkle of advocacy for good taste. The Part IV standards met by this activity include:
Intrapersonal
- Assist privileged and marginalized clients with developing self-advocacy
skills that promote multiculturalism and social justice.
Interpersonal
- Assist privileged and marginalized clients in developing communication skills
to discuss issues of power, privilege, and oppression with family, friends,
peers, and colleagues.
Institutional
- Explore with privileged and marginalized clients the extent to which social
institutions are supportive. - Collaborate with social institutions to address issues of power, privilege, and
oppression impacting privilege and marginalized clients. - Employ social advocacy to remove systemic barriers experienced by
marginalized clients within social institutions. - Employ social advocacy to remove systemic barriers that promote privilege
that benefit privileged clients.
Community
- Employ social advocacy to address community norms, values, and regulations
embedded in society that hinder the growth and development of privileged
and marginalized clients. - Take initiative to explore with privileged and marginalized clients regarding
how community norms, values, and regulations embedded in society that
hinder and contribute to their growth and development.
Public Policy
- Employ social advocacy to ensure that local, state, and federal laws and
policies are equitable toward privileged and marginalized clients.
14 - Employ social advocacy outside the office setting to address local, state, and
federal laws and policies that hinder equitable access to employment,
healthcare, and education for privileged and marginalized clients.
(Ratts, Singh, Nassar-McMillan, Butler & McCullough, 2015).
References
Passion Works (2018). Passion Works Studio. Retrieved from: https://www.passionworks.org/
Portico Network. (2015). DD CARES Best Practices: Adapting medical procedures for patients with developmental disabilities [Video]. Retrieved from: https://www.youtube.com/watch?v=EPJy4zvg4io
Ratts, M. J., Singh, A. A., Nassar-McMillan, S., Butler, S. K., & McCullough, J. F. (2015). Multicultural and Social Justice Counseling Competencies. Retrieved from: https://www.counseling.org/docs/default-source/competencies/multicultural-and-social-justice-counseling-competencies.pdf?sfvrsn=20
“At the heart and soul of Passion Works is a core group of practicing professional artists with developmental differences. People who were historically perceived as unemployable non-viable citizens, are today creating visual evidence of the depth and wealth of the creative human spirit.”
Above are Passion Flowers, the signature art piece of Passion Works (2018).
Servant Leadership Activity
While I have been in multiple environments now with adolescents with intellectual and developmental disabilities (IDD) (in and out of the school system), and I realistically will not be able to follow up in any of these settings for the activity, I am going to act as the school counselor at a school, working with my students with IDD. Since I have been focusing as well on the transition from adolescence to adulthood. This activity will be a transformation of an activity that is already performed at my internship placement- a career day. This full day includes career inventories, ways to explore interests and build skills that currently happens for our 9th graders. I will explain what currently happens, and how I will change each part of the day to make the activity both accommodating to students with IDD while still being appropriate for our typically developing students.
The reason I chose this is to meet two major needs that I found in the previous activities;
● A need to be seen as capable.
● A lack of relationships between people who have IDD and typically developing students.
I was also inspired by the Passion Works studio, which is a fully integrated studio between artists with IDD and artists without IDD. The more I am learning, the more I believe that half of our fear of people with disabilities is because we aren’t around people with disabilities. So my hope is to create a career exploration environment that empowers students with IDD and allows them to work alongside all of their peers.
Old Activity Transformed Activity
Personality/Career Assessments on Naviance Using assessments that are accessible to people with IDD (VIA character inventory, Employability Lifeskills Assessment,
Career Panel Career Panel featuring people both in college and in the workforce, including schools/workplaces that have services accessible to students with IDD
College Interest Survey College and Career interest survey, including 4 year, 2 year, career-technical schools and careers without school training
Bringing in discussion groups
The reality is that these changes are minor, they are a matter of bringing in one/two different tests, or two/three different people, and relatively the same amount of work as the previous career day. The Multicultural and Social Justice Counseling Competencies were established to give a framework for counselors to consider these things and create these small changes that could shape how these topics are viewed in larger systems (like in a school). This activity touched on a few elements of Part IV
Intrapersonal
● Assist privileged and marginalized clients in unlearning their privilege and
Oppression.
● Assist privileged and marginalized clients with developing self-advocacy
skills that promote multiculturalism and social justice.
Interpersonal
● Reach out to collaborate with family, friends, and peers who will be a source
of support for privileged and marginalized clients.
Institutional
● Explore with privileged and marginalized clients the extent to which social
institutions are supportive.
● Connect privileged and marginalized clients with supportive individuals
within social institutions (e.g., schools, businesses, church, etc.) who are able
to help alter inequities influencing marginalized clients.
● Collaborate with social institutions to address issues of power, privilege, and
oppression impacting privilege and marginalized clients.
● Employ social advocacy to remove systemic barriers experienced by
marginalized clients within social institutions.
Community
● Utilize the norms, values and regulations of the marginalized client to shape
the community norms, values, and regulations of the privileged client.
(Ratts, Singh, Nassar-McMillan, Butler & McCullough, 2015).
There has been a very small body of literature that has looked into a strengths-based approach of working with people with Intellectual and Developmental Disabilities (IDD). And because there are already interventions systemically that speak to supporting their weaknesses, this lack of strength-focus can be felt even more strongly by adolescents with IDD.
Maximize Self Sufficiency
The more that we can build skills and provide opportunities for self sufficiency, the more the stereotypes of a lack of ability are squashed. Often, these perceptions are more in the heads of those who do not know people with IDDs than anyone else, and the ways to eliminating ignorance are by exposure and building relationships.
Advocacy for Respect and Inclusion
We have talked about the difference between advocacy and allyhood in previous classes, and I believe there is an extremely fine line for people with IDD, mostly depending on the severity of their disability. We just highlighted how important it is for people with IDD to gain as much independence as they can to raise their self efficacy and confidence. These can include allying in support for more disability embracing college programs, more media exposure of people with IDD in romantic relationships and with successful careers. However, there are things that someone, especially with a more intensive IDD, will not be able to advocate for on their own. An example of this would be proper training and respect for people with IDD by healthcare providers.
Building Relationships with people without IDD
As I stated in the previous article, about 50% of people do not have someone close to them with IDD. This can perpetuate the stereotypes in people’s minds that prevent those with IDD from the advocacy and allyhood are trying to get. This involves “typically developing” people to examine their biases against people with disabilities in general, and how this could be creating unnecessary barriers. Building relationships also creates a cycle of more people being motivated to be advocates and allies, and allows people with IDD to be seen as they are, not as others perceive them to be. In this example, individual relational change can help change larger systems.
References
Wehemyer, M. L., Shogren, K. A., Singh, N. N., & Uyanik, H. (2017). Handbook of Positive Psychology in Intellectual and Developmental Disabilities. Augusta, GA. Springer International.
Niemiec, R. M., Shogren, K. A., & Wehmeyer, M. L. (2017). Character strengths and intellectual and developmental disability: A strengths-based approach from positive psychology. Education and Training in Autism and Developmental Disabilities, 52(1), 13-25.
Systemic Oppression against Adolescents/Young Adults with Intellectual and Developmental Disabilities (IDD)
The sources of this information are less from studies and journals, and more from primary sources. I pulled resources from people with IDD, and the groups that have boots on the ground helping them individually and systemically. These were the four main points of oppression I observed for people with IDD.
Unseen:
Retard- derogatory term towards people with intellectual disabilities
● The words “retard” or “retarded” were tweeted more than 9 million times in 2015 (R-Word, 2018).
“The Short Bus”- a term used towards the transportation of students with disabilities, used as a way to call someone stupid.
● Fun fact: This term was used by Mike Huckabee on a CNN interview in July 2017. (Davidson, 2017).
Significantly harder to have social integration (hobbies, social groups, sports)
● 50% of Adults in the US don’t know a single person with IDD (Williams, 2015).
● Knowing someone in your life with IDD makes you significantly more likely to be accepting and positive toward that person.
Unappreciated:
Not seen for their strengths, seen for their strengths in relation to their disability
Not viewed as equals with typically developing people.
In a Cumulative Study of US citizens’ attitudes towards people with IDD:
● 93% agreed those with IDD could sustain friendships
● 48% agreed those with IDD could understand a news event
● 28% agreed those with IDD could handle emergencies (Special Olympics, 2003).
Unfit:
Overall lower fitness as a collective group than typically developing Americans.
● Because they are seen as not being “able” to participate, people assume they would not benefit from physical activity programs.
○ 65% believe those with IDD are very capable of playing on sports teams with other people with IDD.
○ Only 12% believe those with IDD are very capable of playing on sports teams with people without IDD. (Special Olympics, 2003).
What contributes to lower physical fitness levels in people with IDD the most is lack of opportunity, thus creating a self fulfilling prophecy.
Men with ID- die 13 years earlier Women with ID- die 20 years earlier
Unable to Access:
Communicating with doctors is a continual struggle for people with IDD, and doctors have not been trained to do this in an accessible way for them.
According to a study conducted in the UK, over half of medical students feel “not competent” to treat patients with IDD.
“They just want to be treated fairly and respectfully.”
“Get to know me.”
“Talk to me person to person, like an adult.”
“Look at me.”
-Quotes from Special Olympics competitors on how they desire to be treated medically (2016).
References
Davidson, J. [The Mighty] (2017). Mike huckabee apologizes after insulting intellectual disabilities on Fox News. [Blog Post]. Retrieved from https://themighty.com/2017/07/mike-huckabee-apologizes-fox-news-short-bus/
[Special Olympics]. (2016, August 31). Talk to me: Treating people with intellectual disabilities with respect [Video file]. Retrieved from https://www.youtube.com/watch?v=nc9aAY6-ujQ
Special Olympics (2003). Multinational study of attitudes towards individuals with intellectual disabilities. [Research Study]. Retrieved from https://dotorg.brightspotcdn.com/22/87/ce42454e460cb0d609ab8adb6098/attitudes-toward-id-english.pdf
Williams, M. [TedX Talks]. (2015, December 9). How much do you know about intellectual disabilities? [Video file]. Retrieved from https://www.youtube.com/watch?v=BURbLmQL1BE
[The R-Word]. (2018). Resources. [Blog Post]. Retrieved from https://www.r-word.org/r-word-resources.aspx
Heward, W. L., Alber-Morgan, S. & Konrad, M. (2017). Exceptional children: An introduction to special education (what’s new in special education) Columbus, OH: Pearson Education.
The fourth chapter of this book gives an overview of what intellectual disabilities (ID) are, how they manifest in children, and interventions that are helpful for students in the home and in school. Because of the nature of the book, there are different references cited throughout the book. This book has also been updated as of last year, to keep information relevant. Specifically, legislation cited for definitions include the Individuals with Disabilities Education Act (IDEA) and the American Association for Intellectual and Developmental Disabilities (AAIDD). The purpose of this chapter is neither a research study nor position paper, but an overview of information that would be helpful for an educator to keep in mind when working with students with ID. Some included subtopics were the specific cognitive struggles ID brings, and being able to distinguish between intellectual functioning and adaptive behavior. What seems most prevalent to my learning about ID and advocating for individuals in the future would be understanding the characteristics of the disability, what the experience is like for a family of a child with ID, and what strengths can be seen. This will allow me as a counselor to see the student as holistically as possible, instead of just seeing a diagnosis or an IEP. It is harder to critique this material, since it is a textbook, and covers such a wide range of material. I gleaned so much information from this chapter that I do not know if I would have anything to change.
Rathore, S., & Roopa, M. (2015). Spirituality and social support: Source of coping in mothers of children with intellectual disability. Journal of Psychosocial Research, 10(2), 337-346.
This study examined spirituality and social support, and how these supported mothers who had children with intellectual disabilities (ID). In the beginning of the article, there are two studies cited on each of the coping mechanisms, stating that spirituality “nearly always associated with an adaptive health outcome” (p. 3) and that social support can coincide with healthy family functioning. It also noted the bias against families of children with ID by professionals, with the association of being “higher stress families”. Three out of four studies were within the last 5 years, but some of the bias research is a little dated. The sample included 100 mothers of children with ID ages 7 to 15. Tools used were Spiritual Assessment Inventory (SAI), Social Support Appraisal Scale (SS-A) and Coping Response Inventory – Adult form, along with an interview. There is little information given that describes the women as far as their beliefs on spirituality or the quality of their support systems, but a significant correlation for both spirituality and social support and adaptive behaviors came through. From the interviews, the researchers observed a “crisis of belief” in most mothers when they first received the diagnosis of their child, which followed by a greater “quality in their relationship with God”. ( p. 7). This study provides different resources to a family who is struggling with a diagnosis for their child, which can create for them adaptive coping and allow the family to better support with child with ID. Family support is one of the crucial factors of success for a child’s performance, disability or no disability. I would have appreciated more information on the methodology of the research. It is not noted if the group of mothers were regional or national, as different regions of the country hold spirituality at different priority. I am also curious how these results would differ for fathers, or with both parents included in one study. However, I think the conclusions are relevant, backed up by other studies and make sense logically.
Wehman, P., Chan, F., Ditchman, N., & Kang, H. J. (2014). Effect of supported employment on vocational rehabilitation outcomes of transition-age youth with intellectual and developmental disabilities: a case-control study. Intellectual and Developmental Disabilities, 52(4), 296-310.
This study’s purpose was to examine the effect of supported employment intervention on whether transition-age youth with intellectual and developmental disabilities (IDD) obtained independent employment. In the first section of this article, the transition out of school for people with IDD is explained, and an overview of Supported Employment (SE) shows how that has been a support. It has also been collaborated with the State-Federal Vocational Rehabilitation Program (VR) to widen its scope to people with any sort of psychiatric or mental impairment. This article is supported with a lot of research, but the research does seem dated. This data was quanitative, and retrieved for the U.S. Department of Education RSA-911 database. The sample consisted of 23,298 people with IDD between the ages of 16 and 25 years old, with the majority having an intellectual disability, followed by autism. (4) The data first gathered subgroups of data and gave them a propensity score, which essentially estimated their likeliness to receive SE services. Then, these subgroups also factored in variables such as the severity of the disability and whether they received Social Security benefits, and gathered how many had received SE. Finally, the employment rates were shown for each group that contrasted employment rates in those that received SE versus those who did not. In all but 1 subgroup, people with IDD who received SE had a greater employment outcome between 11-21%. The data also showed that people with ID were more likely to receive SE than people with autism, cerebral palsy or a smaller developmental disability. The implications for this study show the importance of career support services in helping those with IDD transition into employment and more independent living. This was one of the biggest studies conducted on its topic, but even they admitted that they had “limited information on how the severity of disability can effect these numbers” (p. 9). I found the research hard to decipher and oddly organized. It was unclear why receiving Social Security was a variable in the study, and the subgroup “tree” organization seemed more complicated than it needed to be. They had already disaggregated the data by ethnicity and gender in the methods section and could have disaggregated that by the disability and/or severity, and potentially made the data much more simple to digest. The purpose of the article was specifically advocate for SE, however, this could have also been used to campaign for other supports, or to look at the factors that prevented those who received SE from gaining employment.
Wilson, N. J., & Frawley P. (2016). Transition staff discuss sex education and support for young men and women with intellectual and developmental disability. Journal of Intellectual and Developmental Disability, 41(3), 209-221.
This study’s purpose was to examine the quality and amount of sexual education and support offered to adolescents with intellectual and developmental disabilities (IDD) in Australia. The literature in the first section of this article speaks to the lack of sexual education that is accessible and inclusive for students with IDD, and how poor experiences socially and/or sexually can be alienating for adolescents as they transition to adulthood. There is also survey research shown on how gender intersects in sexual education for adolescent girls with IDD, where they are more likely to be viewed as “sexual innocents”. The research is all within the past 10 years, however, there is potential room for discrepancy since the majority of the research is from Australia. The sample included 17 staff from 3 agencies, on their experiences providing sexual education support to students with IDD. The data was collected through focus group interviews, to gain individual perspectives as well as seeing how participants reacted/interacted with others views. The interviews revealed a theme of the “reluctant counselor”, observing a feeling of obligation to help the adolescents in this area, but out of fear that no one else will. It was also stated in each of the groups that the purpose of their agencies was employment/career support, and the “development of social and sexual skills, knowledge, and behavior was not necessarily a formal expectation of the service” (p. 5).
Implications of this study include being able to educate adolescents with IDD on sexual health, in order to protect them from STD/STIs, along with emotional/social isolation from poor sexual experiences. There is clearly not enough research being done in this area on how to support them if we do not even want to. Overall, the initial literature and the conclusion both speak to the fact that there is little information on the topic of sexual education that is accessible for people with disabilities, and so I cannot fault this article for the holes in information.
Hall, S. A. (2017). Community involvement of young adults with intellectual disabilities: their experiences and perspectives on inclusion. Journal of Applied Research in Intellectual Disabilities, 30(5), 859-871.
The purpose of this study was to show the barriers that prevent people with intellectual disabilities from being able to involved in their communities. The beginning establishes research on ID, and how community involvement Is one of the key aspects of social inclusion that enhances their quality of life. There are at least 15 sources cited within the first couple of pages alone, and it seems that the conclusions are cohesive and that the topic has been searched thoroughly by Hall. The sample included 14 young adults with ID, and the questions explored their involvement with work, recreation, and leisure activities. Four themes emerged in the findings: 1- vocational endeavors, 2- leisure pursuits, 3-social inclusions, and 4-supports. Many of the participants worked part-time jobs or volunteered, but struggled to find work they enjoyed. There were also limited opportunities to interact with coworkers and develop friendships for many. They reported feeling accepted and part of a community when others “initiated conversations with them”, “treated them with respect” and “treated them like other people their age” (p. 8) Transportation was the biggest hindrance for several of the people interviewed, as they received rides from service providers to go to work or volunteer. The implications for this study are wide because the study involves many aspects of how people with ID relate to their community. The viewpoints given by the people in this study can help programs that run career skills groups to personalize their work more. It can also help peers of someone with ID to understand what makes them feel respected and included from their perspective. Overall, I think this study is helpful and current and does a good job of bringing a wide range of personal experiences of people with ID. I appreciate that it looked into multiple aspects of community involvement, and sought out how these interviewees enjoyed their jobs, not just whether they had one or not.