A call for thorough shoveling…and enforcement of the ADA by Sarah Weldy, OT Trainee

Personally, I have never felt quite so humbled as when I had to think about curb cuts for the first time. Have you ever had to think about curb cuts? What is a curb cut, you ask? You know, where the curb…cuts down so the sidewalk meets the street without the bump of the curb. Here, I’ll just show you:

Curb cuts are well and good, because they make the sidewalk accessible to someone in a wheelchair or using a walker. Fantastic, right? The bad news is that in the cold Chicago winters, this tends to happen:

Rarely does someone shoveling the sidewalk think to clear the entire curb cut to the street; they usually just let people with use of their feet sort of climb over the mound of snow that has been shoveled into a mountain right where the curb cut occurs.

I am embarrassed to say that in my life I never thought about how this would affect someone using wheels for mobility, at least not until I was the personal assistant for someone with a neurodevelopmental disability who used a wheelchair. It is difficult to convey how frustrating it was for the two of us to make plans to go out, seeing mostly clear sidewalks and plowed roads, only to realize that we could not get over the curb cut at the end of a sidewalk. Sometimes we rerouted and found a new way. Sadly, other times we simply could not, and turned back.

Now at this point you may be asking yourself, who is this woman who is so angry about curb cuts, and what is her point?

Well hello there, my name is Sarah Weldy, and I am an occupational therapy student and trainee with the UIC LEND program. And for one, I want people to show some respect to the community by shoveling their sidewalks thoroughly! But more than that, I want to talk about the ADA.

The Americans with Disabilities Act was passed in 1990 and marked the beginning of accessibility in our country. There have been many positive, progressive effects of the ADA – it was a victory for it to be passed. As the ADA National Network describes: “the ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.”

BUT –

Systemically, we see the ADA not being properly enforced. As you dive into the world of disability, you are sure to find how the follow through on this legislation has been less than enough. For example, the ADA requires accessible walkways so the city puts in curb cuts – but then doesn’t clear the opening when it snows. I am sure you can imagine a whole flurry (no pun intended) of other situations where the ADA should be able to remove physical barriers – but it extends to intellectual and developmental disabilities too! When it is expensive or inconvenient, individuals, businesses, schools, counties, and towns often simply do not put in the effort to be adherent with the ADA – whether making a ramp for a wheelchair user or giving someone extra needed time to complete a task. And I do not know about you, but until I was immersed in disability advocacy, I simply assumed that everyone was adherent!

As a future occupational therapist, I see it as my responsibility to educate people on this issue and help make change. Within my field, we heavily consider how the environment a person is in can be modified to make their life more fulfilling. Since I am not a lawyer, I will not personally be able to sue negligent organizations that are harming my clients… but I can educate clients on how to self-advocate and yes, seek legal counsel. I can write letters to my local politicians and advocacy groups when I see something wrong. And you can too, in fact, to start you off I want you to bookmark this fantastic organization, Access Living, that is Chicago-based and has a civil rights issue hotline email…with three cases cooking right now!

And lastly, you better believe I will shovel my curb cuts. Oh, will I shovel. Will you join me?

References:

Image 1:Wikipedia.org/curbcut

Image 2: cortlandstandard.net

https://adata.org/learn-about-ada

https://www.accessliving.org/our-services/legal-services/

The Issue of Bullying for Students with Disabilities by Rex Li, Special Ed Trainee

Many students who witness bullying believe they do not have the means or power to stop it. While they might not have been directly harmed, it still contributes to the mounting sense of fear and powerlessness in our schools. Bullying and cyber-bullying are some of the most prevalent issues throughout schools in the United States1. Although bullying does not discriminate by gender or race, it however certainly affects students with disabilities at a much higher rate than those without2. Moreover, whether a student is being bullied, participating in bullying, or is simply a bystander to a bullying occurrence, the devastating effects it causes nonetheless disrupts the overall learning environment from remaining as a place of safety and respect for all.

Despite the disproportionality in bullying towards students with disabilities, research has shown that this effect could be moderated by several factors3. Specifically, the combination of personal, school, and community factors all play a role in influencing bullying behavior and victimization rates. For example, educators who are more cognizant of disability characteristics and encourage social awareness are one of the prime influencers in reducing bullying prevalence within the classroom setting4. Furthermore, it is important for stakeholders involved with a student’s education to collaborate in fostering a culturally and socially competent environment that is inclusive of all students. Finally, professionals and caregivers can initiate this by providing children with the understanding the impact they can have on their peers and encouraging them to make a difference.

Below are some additional tips you can impart to students to prevent bullying:

·       Say “Hi” or smile at someone in the hallway.

·       Talk to someone in your class that you have never spoken with before.

·       Join your school’s anti-bullying club, if you don’t have one, start one!

·       Invite the person who is usually alone to play together or sit with your group.

To learn more about behaviors, signs, and strategies on bullying, visit the following resources:

·       StopBullying.gov

·       PACER's National Bullying Prevention Center

·       National Education Association

JOIN THE MOVEMENT

October is the National Bullying Prevention month which unites communities
nationwide to educate and raise awareness of bullying prevention.

Rex Li, M.A.

Doctoral Student, Department of Special Education

University of Illinois at Urbana Champaign

References

1Raskauskas, J., & Modell, S. (2011). Modifying anti-bullying programs to include students with disabilities. Teaching exceptional children, 44(1), 60-67.

2Rose, C. A., Swearer, S. M., & Espelage, D. L. (2012). Bullying and students with disabilities: The untold narrative. Focus on Exceptional Children, 45(2), 1-10.

3Rose, C. A., Monda-Amaya, L. E., & Espelage, D. L. (2011). Bullying perpetration and victimization in special education: A review of the literature. Remedial and special education, 32(2), 114-130.

4Swearer, S. M., Espelage, D. L., Vaillancourt, T., & Hymel, S. (2010). What can be done about school bullying? Linking research to educational practice. Educational researcher, 39(1), 38-47.

5Pellegrini, A. D., & Long, J. D. (2002). A longitudinal study of bullying, dominance, and victimization during the transition from primary school through secondary school. British journal of developmental psychology, 20(2), 259-280.

6Pellegrini, A. D., Bartini, M., & Brooks, F. (1999). School bullies, victims, and aggressive victims: Factors relating to group affiliation and victimization in early adolescence. Journal of educational psychology, 91(2), 216.

7Nansel, T. R., Overpeck, M. D., Haynie, D. L., Ruan, W. J., & Scheidt, P. C. (2003). Relationships between bullying and violence among US youth. Archives of pediatrics & adolescent medicine, 157(4), 348-353.

8Van der Wal, M. F., De Wit, C. A., & Hirasing, R. A. (2003). Psychosocial health among young victims and offenders of direct and indirect bullying. Pediatrics, 111(6), 1312-1317.

9Olweus, D. (2013). Victimization by peers: Antecedents and long-term outcomes. In Social withdrawal, inhibition, and shyness in childhood (pp. 325-352). Psychology Press.

10Juvonen, J., Graham, S., & Schuster, M. A. (2003). Bullying among young adolescents: The strong, the weak, and the troubled. Pediatrics, 112(6), 1231-1237.

11Oliver, R., Hoover, J. H., & Hazler, R. (1994). The perceived roles of bullying in small‐town midwestern schools. Journal of Counseling & Development, 72(4), 416-420.

Inclusive Transition Programming: Who is Really Included? by Sarah Deangelo, Special Ed Trainee

You may have heard the term “College is not for everyone…” and I suppose that really is true.  I am not here to force anyone into my preferred existence of being in school forever. I don’t believe that anyone should have to go to college if they do not want to.  I also believe that anybody who wants to go to college should have that opportunity, and that includes students with intellectual disabilities. 

              “How can that work?” you might ask.  Well let me tell you, that was probably the exact same question teachers in public elementary and secondary schools were asking in 1975 when the Individuals with Disabilities Education Act (IDEA) was passed, mandating that students with disabilities have the opportunity to be educated in public schools.  Just like much of public special education programming, college may look a little different for students with intellectual disabilities, but that doesn’t make it any less valuable. The social value of inclusion in age appropriate and natural environments for young adults with disabilities alongside their peers cannot be ignored.

              Fifteen of these programs for students with intellectual disabilities exist in the state of Illinois to date, and hopefully the number is growing.  This was made possible by the Higher Education Opportunities Act (HEOA) of 2008, which created opportunities for students with intellectual disabilities to attend institutions of higher education alongside their nondisabled peers. Students in these programs have opportunities to learn academic, vocational and daily living skills in a more inclusive environment than is offered in many other types of transition programming.

              You may now be thinking, “Well now this seems a little too good to be true,” and my answer to that would be “Well no, but also yes.”  There is no shortage of caveats to these programs.  The first being, like any college in the U.S., they cost money. How much varies, and there are some ways around this…however chances are families will end up paying at least something in some way for these programs. Another caveat is that they are somewhat exclusive.  I know that sounds counterintuitive for a whole genre of programming built on the premise of inclusivity, but unfortunately it is not inclusivity for everyone.  It is generally inclusivity for students with intellectual disabilities but no behavior problems and above a third grade reading level, so I suppose we can use the term inclusive with a bit of a grain of salt here. 

              Despite these caveats, I think these programs are really promising and really exciting.  I think they signal the start of a more inclusive future for all people with disabilities.  They may not be the pinnacle inclusive transition programming models, but they are a good start. 

Students talking about how inclusive transition programming has benefitted them.

For more information on college programming for students with intellectual disabilities visit

https://thinkcollege.net/

For more information on how you can access funding for these programs visit

https://lesley.edu/article/paying-for-a-transition-program

Self-Care in Graduate School by Hope Sparks, Disability Studies Trainee

I just finished the third week of my Ph.D. program! Part of being a Ph.D. student involves working as a research assistant, which I’m currently doing at a family clinic on campus. I recently had an eye-opening conversation at the clinic surrounding self-care, and how vital it is to take care of ourselves as individuals to be better students and employees.

Academia is hard, and I don’t just mean the classes! Sure, coursework can be difficult, but it’s unlikely that someone who is pursuing a graduate degree dislikes the subject matter. The true challenge is learning how to prioritize our well-being while also maneuvering a unique, isolating path. It’s strange being the one friend who’s still “going to school” and having to constantly answer “But what exactly do you do?”. To make it harder, that confusing path falls within an overarching system of oppression. [AK1]  I consider myself very lucky to be in the field of academia, but the field historically only benefits certain individuals, and intentionally disadvantages other individuals based on their identity (Which could be gender, race, disability, etc.) which keeps dominant groups in power. It can be difficult to acknowledge the flaws of a system that you’re directly supporting and benefitting from, but higher education needs to hold itself accountable to improve.

Being on the confusing path can also lead to mental health concerns. More than 30% of graduate students screened positive for depression or anxiety during the COVID-19 pandemic (Chirikov et al., 2020). Research has also found that in 2019, 1 in 3 college students faced food insecurity (Laska et al., 2020), which has likely become even worse due to the pandemic. These statistics prove how difficult it currently is for graduate students to prioritize self-care. Facing a global pandemic and food insecurity leads to our priority being survival, not bettering ourselves, or preventing burnout. Also, these overarching, disheartening statistics don’t acknowledge the oppression[AK2]  of other aspects of graduate student’s identities (gender, race, ability, etc.), both within the field of academia, and within society at large.

In addition, imposter syndrome (believing personal success isn’t deserved or legitimate) runs rampant in graduate school, which further impacts mental and physical health, and stress levels. Everyone in academia faces imposter syndrome, but to combat it we must be as kind to ourselves as we would be to our peers.

All this to say, academia is hard, but taking care of ourselves currently might be even harder! The conversation I had recently illuminated how necessary it is to set boundaries. Working from home has made it that much harder to shut off at the end of the day.

But we’re academics, researchers, and clinicians. We’re not robots. We need to acknowledge how much control we truly have over a situation, or the systems we work in, and how much control we don’t have. The conversation illustrated that being able to say “no” sometimes and living a life outside of the ivy walls is a gift. No one makes the space for you but you. So, pick up the new hobby! Start taking the Pilates class! Turn off your phone’s email notifications during the weekend (or maybe all the time!).

I am incredibly thankful for that conversation I had about self-care and thankful to be in a department that values self-care. I’m hopeful that acknowledging and trying to respect these boundaries and tools early on will help me throughout my progression in my program. I’m also hopeful that writing about them for the blog helps you too!

References & Resources

Chirikov, I., Soria, K. M, Horgos, B., & Jones-White, D. (2020). Undergraduate and Graduate Students’ Mental Health During the COVID-19 Pandemic. UC Berkeley: Center for Studies in Higher Education. Retrieved from https://escholarship.org/uc/item/80k5d5hw

Laska, M. N., Fleischhacker, S., Petsoulis, C., Bruening, M., & Stebleton, M. J. (2021). Food Insecurity Among College Students: An Analysis of US State Legislation Through 2020. Journal of Nutrition Education and Behavior, 53(3), 261–266. https://doi.org/10.1016/j.jneb.2020.11.010

The National Equity Project’s explanation on the lens of systematic oppression: https://www.nationalequityproject.org/frameworks/lens-of-systemic-oppression

 [AK1]Unpack this a little for context

 [AK2]Within or outside academia or both?

Finding your Superpower by Xinyi (Emily) Zhou

When I did my pediatric neuropsychological assessment practicum, the most unforgettable moments were my supervisor’s feedback sessions to our young patients (ages 3-18). The children we saw were commonly referred to neuropsychological testing due to concerns for neurodevelopmental disorders (e.g., ADHD, ASD), learning disorders, and complex neuro-related medical conditions (e.g., brain tumors, epilepsy, traumatic brain injury). After administrating 6-8 hours of testing and writing up 10-20 pages reports, my supervisor always said “here comes the highlight of the event”, that is, the feedback session. Regardless of the diverse clinical presentations and diagnoses, she would draw a superhero with strong muscles and showed the picture to the kids, “do you know what we found in our testing? Do you know you have superpower? Has anyone ever told you that before? Let me tell you what we found in our testing results, our data shows that you have superpower in…”. In that moment, you can’t imagine how bright the kids’ faces became, their posture changed (for instance, they would lift up their heads higher), their eyes glittered with confidence, and their smiles became as brilliant as sunshine.  The superpower metaphor affirmed and empowered these young patients especially when these comments were made in front of their parents! More importantly, these “superpower” comments are not merely encouragement out of good intention, they are also supported by data.

Some autistic individuals have extraordinary ability in cognitive domains required by engineering or architecture such as visuospatial reasoning, visual perception, or visuospatial construction. In a similar sense, some people like to identify some children with ADHD as a Ferraris whose minds run very fast. Media often deifies people with disabilities (e.g., Shaun Murphy in the show “good doctor”). Gifted individuals do exist in clinical settings, yet people are gifted in different ways and often their gifts may not as obvious (e.g., academic achievement).  One of our jobs as psychologists is to discover the gifts of the young people we see.

However, the most interesting thing is, no matter how distressing the overall data seems, no matter how long the list of diagnoses is, no matter how severely functions are impaired, there is always a strength that stands out. We only need an eye to see, an eye with hope, an eye with love, and an eye with belief. Once I saw a boy whose testing data showed that his performance on most cognitive domains and social skills fell into exceptionally impaired range and multiple of his family members had disabilities. I struggled with how to share these results with the family and the child and how to convey a message with hope. My supervisor reviewed the datasheet and said with a face of surprise, “look at his scores on behavioral and emotional function and imagine the stress in his daily life”. When I imagined how heavy the burden he carried every day, it is indeed amazing that he had the ability to regulate his emotions and monitor his behaviors well in the midst of chaos. It was a big comfort for the exhausted family while they struggled with inadequate resources and supports from the bigger societal system. When we take a microscopic scrutiny on our lives and other people’s lives, we will find many “superpowers” we possess that we may have taken for granted.  

Multilingualism and Autism: A primer for professionals

Parenting a child who has recently been diagnosed with Autism can be overwhelming.

There is often an influx of new information and decisions to be made. Such as, should I put my

child in therapy? What sort of therapy? What is an IEP? Will putting a ‘label’ on my child harm

their future? Some questions may never have a clear-cut answer and will depend on a family’s

values and resources. However, one question that all professionals should answer for parents is:

Can my child learn English in school and keep speaking Arabic/Korean/Spanish/etc. at home?

Your answer should be YES!

Children with autism can absolutely learn multiple languages. There is no substantial

evidence that a child with autism may be negatively impacted by learning more than one

language 12 . Nearly one-quarter of all households in the state of Illinois speak a language other

than English, and worldwide, 2/3rds of the world’s population speaks at least two languages.

Multilingualism can be a great gift that opens someone’s life to new experiences and

opportunities. Research has shown that children with Autism and other developmental

disabilities may experience “bilingual benefits.” These are well-documented cognitive

advantages found in typically developing bilingual adults and children.

Advising a family against maintaining their heritage (home) language may negatively

impact caregiver and family member’s ability to comfortably and fluently engage with their

child 34 . Family members are a child’s first and most influential teachers! Advising multilingual

family members to only speak English to their child may lower the quality of interactions

between them and the child. We know the importance and benefit that high-quality interactions

with a caregiver can have on a young child’s language and social development. Also, if a child

does not learn the language of their community, this may decrease their future opportunities to

meaningfully engage with their peers, cousins, and extended family and friends. Please help the

families you work with to engage with their children in the most comfortable and meaningful

language for them.

I encourage my fellow professionals to help families find a support system in their native

language as much as possible. Also, be aware that families may have been falsely told by other

professionals that multilingualism may negatively impact their child’s learning and development.

This is a myth! Encourage and practice evidence-based decision-making and inform your

colleagues of the benefits of multilingualism too.

Melanie R Martin, M.A., BCBA

PhD Student in Special Education at University of Illinois at Urbana Champaign

(Image description: A young child’s hands rest over a globe. North and South America are

visible.) (Stock image found through Microsoft word.)

1 Wang, M., Jegathesan, T., Young, E., Huber, J., & Minhas, R. (2018). Raising children with

autism spectrum disorders in monolingual vs bilingual homes: A scoping review. Journal of

Developmental and Behavioral Pediatrics, 39(5), 434–446.

https://doi.org/10.1097/DBP.0000000000000574

2 Uljarević, M., Katsos, N., Hudry, K., & Gibson, J. L. (2016). Practitioner Review:

Multilingualism and neurodevelopmental disorders – an overview of recent research and

discussion of clinical implications. Journal of Child Psychology and Psychiatry and Allied

Disciplines, 57(11), 1205–1217. https://doi.org/10.1111/jcpp.12596

3 Papoudi, D., Jørgensen, C. R., Guldberg, K., & Meadan, H. (2020). Perceptions, experiences,

and needs of parents of culturally and linguistically diverse children with autism: A Scoping

review. Review Journal of Autism and Developmental Disorders, 2017.

https://doi.org/10.1007/s40489-020-00210-1

4 Lim, N., O’Reilly, M. F., Sigafoos, J., Ledbetter-Cho, K., & Lancioni, G. E. (2019). Should

heritage languages be incorporated into interventions for bilingual individuals with

Neurodevelopmental disorders? A Systematic Review. Journal of Autism and

Developmental Disorders, 49(3), 887–912. https://doi.org/10.1007/s10803-018-3790-8

My Teaching Journey

I often get asked about my journey into the Special Education field. Many people are surprised when they find out that it was my lack of experience and knowledge that led me to the path that I am on today. I began my career in a general education classroom, as a kindergarten teacher in the city. I distinctly remember having two students with autism spectrum disorder (ASD), a disorder I knew absolutely nothing about. Because of their IEPs, these students (whom I will name D & E) would only spend a part of the day with me, and when they entered my classroom, they would always sit in the corner of the room, with an assistant helping them with daily activities. I remember thinking how little I knew about their disability, and how much I yearned to support them, beyond what I was already doing. I remember writing on the white board during Math lessons, and turning around and looking at them, looking at me. It was during those moments that I felt inexplicably connected to them, as I reflected upon how incredibly unique each of them were; how their diagnosis was the only thing they had in common, because their personalities, wit, and abilities varied greatly. I began by reading more about ASD, in an effort to help them, but my goal shifted as I strived to know D & E as individuals, apart from their disability, and the more time I spent with them, the more I realized just how capable they are as individuals. The more I got to know them, the more I loved them, and the more that I continued to seek knowledge to be a better educator and a more compassionate human being. My passion for education led me to pursue a Master’s Degree in Special Education (with an emphasis on ASD), and now a PhD in the same field. I currently work as a special education teacher and my research is centered on supporting students with autism in general education classrooms, and with every encounter that I have with a new student, I remember D & E. Everything that makes me who I am as an educator today is because of them.

Since entering that school, I’ve worked in several other schools, gaining experience in self-contained and general education classrooms, as I worked with students with different disabilities. Looking back, I know that I learned more from my students at that school than I could ever learn from anyone else. Those students-the ones who had meltdowns, the ones who were nonverbal, the ones in wheelchairs, the ones who struggled writing their names- they were the ones who taught me how to teach. They taught me that they were not defined or limited by their circumstances. They taught me to look beyond what the eye sees. They taught me that good teaching is giving each student access to the resources they need to access their learning environment. And most of the time, that means giving students different tools to succeed both in and out of the classroom.

It has been years since I’ve seen D & E. Much has changed in my life, but I have never forgotten their impact on me, and I hope to someday share this story with them. My philosophy centers around the belief that each individual we encounter is worthy of respect. And as I heard in an autism seminar, “the key to being comfortable around an autistic person is to know that under each veil of autism there exists an intelligent being with the same emotions you have.” As an advocate for individuals with disabilities, I hope to increase access to inclusion, and provide a better understanding of the word "disability;" one that is neither positive nor negative, but one that promotes the idea that the individual with disabilities is unique, as opposed to them being seen as being "less than" or "deficient" as they are sometimes seen in the medical sense. Most importantly, I embrace the perspective of the social model of disability in my everyday practices and beliefs, because although a person's disability poses some limitations in an able-bodied society, it is often the surrounding society and environment that proves to be more limiting than the disability itself: “There is no greater disability in society, than the inability to see a person as more” (Robert M. Hensel). It is up to us educators to “to teach in a manner that respects and cares for the souls of our students...if we are to provide the necessary conditions where learning can most deeply and intimately begin” (Bell Hooks).

For more information on how to support individuals with ASD, please visit:

https://corescholar.libraries.wright.edu/cgi/viewcontent.cgi?article=1153&context=ejie

https://journals.sagepub.com/doi/pdf/10.1177/2396941518804407

https://www.tandfonline.com/doi/pdf/10.1080/02673843.2018.1433695?needAccess=true

https://www.tandfonline.com/doi/epub/10.1080/09687599.2019.1594700?needAccess=true

https://www.readingrockets.org/article/supporting-students-autism-10-ideas-inclusive-classrooms

https://www.scholastic.com/teachers/articles/teaching-content/teaching-students-autism-spectrum-disorder/

The Fight Against Early Inequality by Feresha Patel

Most healthcare professionals who work with the pediatric population are aware that the first few years of life are a critical period while a child’s brain is quickly developing and the most neuroplastic.  There is existing evidence indicating that inequalities between races exists in the early intervention (EI) program. A 2019 report highlights in detail the inequalities in New York State’s early intervention program. Due to funding from New York State there are major racial and socio-economic disparities in access to EI services. There are several problems that are highlighted. 

• In 2018, 1 out of every 4 children who were found eligible for EI services in NYS did not receive services in the necessary time frame. 

• Lower income communities are consistently the least likely to receive evaluations after referral to EI services. 

• The neighborhoods where children were found to be eligible for EI services and are least likely to receive them are primarily low-income communities of color

• To further this, in neighborhoods where there are higher rates of eligibility the black children are less likely to receive services. 

There are two drop off points that were found: referral to evaluation and eligibility to receive services. On average the drop off rate between referral and evaluation is 11.9%, what is significant is that when you break it down by race there is clear inequality:

• 11.3% Asian

• 16.5% Black

• 12.7% Hispanic

• 11.1% White

The average drop-off rate in NYC between evaluation and receiving services is 5.4%. This again varies based on race:

• 5.7% Asian

• 6.8% Black

• 6.3% Hispanic

• 3.9% White

This report suggested steps that both state and city leaders could take to address these early inequalities. New York as a state should consider increasing rates for EI workers. The state should fund a cost-study to assess and recommend changes to improve payment to help address the low capacity of workers in low-income and underserved communities. They should consider policy changes that make sure health insurance companies pay their share to help cover EI services. They should conduct a statewide analysis of disparities in access to evaluations and services for EI and implement a quality improvement plan.

The city should issue an annual public report on the provision of EI evaluation and services so the public can hold the city and state accountable for addressing disparities and children getting their mandates met. The city should analyze the disparities in EI services and evaluations and create a plan to address the problems. This could be anything from training service coordinators on cultural competency to following up with families better. 

On a personal level what we do? We can all check our implicit and unconscious biases.  Do we have any prejudices that are embedded from society? Before refusing a case based on the zip code, remember that these children need services.  This report is critical for other states and cities to look at and consider allocating funding to assess if their state and cities also have inequalities. By addressing these early inequalities, lives of many children and families will be improved leading to overall improved quality of life and improved future outcomes. As early intervention providers, we must be aware of the disparities in our state and advocate for that change. 

Access the Full Detailed Report at the Link Below:

https://cccnewyork.org/new-report-details-inequality-in-states-early-intervention-program/

Reference 

Early Inequalities How Underfunding Early Intervention Leaves Low-Income Children of Color Behind. (2019, December). https://s3.amazonaws.com/media.cccnewyork.org/2020/12/OAyzWd1P-EI-Report-FINAL-12-4-19.pdf

Ableism in Our Own Ranks by Donna Azcuna

In a recent study that examined physician perspectives related to people with disabilities (Iezzoni et al., 2021), results indicated that 80% of physicians believe that people with significant disabilities have a worse quality of life than those without disabilities. Furthermore, only about 18% of physicians believe that the medical field is unfair towards those with disabilities. 

I am currently training to be a pediatric psychologist and have the privilege to work with children with disabilities and their families to address behavioral health concerns that may arise when coping with a medical condition. In this role, I work closely with physician and medical teams. I was, like many medical and adjacent professionals (along with the entirety of the Twitterverse), frustrated by the results of this study – understandably so. Nevertheless, these results are not new, but merely a snapshot of the current situation. Ableism has been deeply engrained in the medical field for years. For the disability community, the results of this study confirmed many painful lived experiences. For medical professionals, it was a reflection of the many ways we have failed to address ableism in our own ranks. 

There are many questions that have been raised as a result of Iezzoni’s study – how did this happen? Who is responsible? How to we stop a culture of ableism in the medical field? As a graduate student, I reflected on my own experiences and the ways that ableism has been implicitly (or explicitly) engrained in my own psychology training. There have been very few instances of engagement with disability issues in the classroom, lack of relevant training or collaboration experiences with those with disabilities, and limited exposure to disability self-advocacy. There is a huge lack of representation of those with disabilities within psychology leadership and in the student population. Majority of psychology students are dissatisfied with disability-related training experiences (Green et al., 2009). I became interested in the question of who is responsible for preventing ableism in the medical and mental health field. Specifically, I am most curious about how we teach future mental health professionals to care about and utilize multicultural and social justice approaches in their work. Said another way, how do we teach students to be anti-racist, anti-ableist, anti-sexist, anti-xenophobic, anti-homophobic, anti-transphobic, etc.? 

I think one of the most important aspects in teaching future medical and mental health professionals is through the training environment, specifically, the social justice training environment. Graduate training is an incredibly formative time for future healthcare professionals. During this time, student attitudes, beliefs, and behaviors are highly influenced, especially related to multiculturalism and social justice. There are a few ways that graduate and medical programs can invest in anti-ableist education and training opportunities for their students (adapted from McConnell et al., 2021): 

1. Multicultural and social justice orientation infused throughout the training environment. This includes through teaching, education, relationships, modeling, etc., at every level of engagement.  

2. Inclusivity. There should be diverse representation throughout all levels – faculty, students, administration, leadership, etc. This means hiring diverse educators, recruiting students with intersectional identities – AND creating and fostering a culture that supports retention of these individuals. 

3. Identity. Encourage all persons to develop a multicultural-social justice identity. This should also include awareness of own intersectional identity, as well as engagement with personally meaningful reflection of power, privilege, and oppression in identity development (Caldwell & Vera, 2010). 

4. Opportunities. There should be practical and applied learning opportunities to engage in multicultural and social justice informed work. 

5. Collaboration. Healthcare services do not occur in a vacuum. Encourage students to collaborate with community organization to engage with anti-ableism efforts beyond the classroom (Viecili et al., 2010). 

These five examples provide only a starting place for programs to engage multiculturalism and social justice in the formation of their students. The good news is that there are so many great approaches and resources available! I hope that the results of Dr. Iezzoni’s study is a wake-up call for medical and mental health training programs to better engage anti-ableist perspectives and practices. 

A picture containing books, shelves, library; male student appears blurry in the background, wearing a backpack.

References:

Disability Visibility: First Person Stories from the 21st Century. Edited by Alice Wong. https://disabilityvisibilityproject.com/book/ 

Green, D., Callands, T. A., Radcliffe, A. M., Luebbe, A. M., & Klonoff, E. A. (2009). Clinical psychology students’ perceptions of diversity training: a study of exposure and satisfaction. Journal of Clinical Psychology, 65(10), 1056–1070. https://doi-org.ezproxy.wheaton.edu/10.1002/jclp.2060

Iezzoni, L.I., Rao, S.R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N.D., Donelan, K., Lagu, T., & Campbell, E.G. (2021). Physicians’ Perceptions of People with Disability And Their Health Care. Health Affairs, 40(2), 297-306. 

McConnell, J.M., Liu, T., Brown, E.M., Fort, C.J., Azcuna, D.R., Tabiolo, C.A.M., Kibble, C.D.M., & Winslow, A.B. (2021). The multicultural peace and justice collaborative: Critical peace education in a research training environment. Peace and Conflict: Journal of Peace Psychology, 

Viecili, M., MacMullin, J., Weiss, J., & Lunsky, Y. (2010). Predictors of Psychology Graduate Student Interest in the Field of Developmental Disabilities. Journal of Mental Health Research in Intellectual Disabilities, 3(4), 190–201. https://doi-org.ezproxy.wheaton.edu/10.1080/19315864.2010.524725

Disability Lessons in Practice by Vanessa Peixoto Honorato

“When and how did I learn about this aspect of disability before here and now?” That was a question I often asked myself during an undergraduate course where I had my first contact with the field of disability studies. There, I realized I had informally learned so much about disability in the years prior to that: through harmful media representations I consumed since I was a child, through language that assigns negative meanings to disability, through inaccessible spaces and their absence of visibly disabled people in them.

Since that first disability course, I had the opportunity to continuously learn from, and with, self-advocates, family members of people with disabilities, and talented peers from my field and other professions.

As I continue to work with people with disabilities in different settings and move closer to becoming an occupational therapist, I often reflect on how to make sure I bring the knowledge I acquired into practice. Below are three notes I keep in mind to make sure the lessons I have learned inform my daily work to promote adequate, equitable, and culturally sensitive services to people with disabilities and their families.

Communication Matters - Do Not Make Assumptions!
Communicating in an empathetic way and the call for not making assumptions are recurring themes from conversations and lectures led by people with disabilities. Although it does not ask for much, it can make a great difference when working with people with disabilities: to communicate in a way that demonstrates attention, interest, and acknowledgement of the person who is there and their lived experience. Failures in interpersonal communication in healthcare can lead to many serious consequences, such as late diagnosis and procedural errors, and it is the main cause of medical-legal complaints (Taylor, 2020). When in doubt about something, do not assume the answer is known – ask.

Celebrate and Share Positive Depictions of Disability.
The prejudicial representations of disability in the media are extensive. Besides that, mainstream media often leaves disabled people out of its productions, with about 95% of the disabled characters in TV being played by non-disabled actors. Hari Srinivasan, a nonspeaking autistic young adult, wrote about how the few depictions of non-verbal disabled people in the media he had access to growing up were traumatizing, reinforcing negative stereotypes that contribute to the limited opportunities given to disabled people. In January of this year, as a response to the movie discussed in Sasha Micek’s blog post, the organization CommunicationFIRST released a short movie titled LISTEN, featuring nonspeaking autistic people with the goal of increasing awareness about their real-life experiences. Short movies like LISTEN are valuable pieces created by disabled people that should be amplified whenever we have the chance to do so.

Advocate and Support Self-Advocacy
Disability advocacy can take many forms. It could be through the support of development and implementation of disability policies. It could be by engaging in education that contributes to the reduction of stigma. It could be by connecting patients and clients with disabilities to disability organizations that provide not only guidance in rights, but a space for culture and community. I once attended a lecture from a young man with a neurodevelopmental disability who only received his correct diagnosis as an adult. He shared how the health professionals that were working with him in the hospital he was receiving rehabilitation services connected him with a local disability organization that he was not familiar with. There, he had a chance of further exploring aspects of his disability identity and developed his roles as a disability rights and disability justice advocate, as a public speaker, and as a community leader – all of which he described as having contributed to his general wellbeing and quality of life. As professionals working with people with disabilities, we should not underestimate the opportunities of connecting our patients and clients with organizations, resources, and initiatives that they may benefit from, and that they bring value to.

References 

Taylor, R. R. (2020). The Intentional Relationship – Occupational Therapy and Use of Self. (Second Edition). F.A. Davis. 

Is Cultural Competency Training Enough? By Jessi Hinman, ABA Trainee

To set the context, here are some facts about the field of behavior analysis. As of January 4, 2021, there were 44,025 Board Certified Behavior Analysts (BCBA; Behavior Analytic Certification Board, n.d.). Of those BCBAs, 71.82% are white, 9.34% are Hispanic/Latinx, 5.99% are Asian, 3.60% are Black, 0.38% are Native Hawaiian or Pacific Islander, 0.30% are American Indian/Alaskan Native, and 8.57% have not provided their demographic information. Let’s take a look at gender. Of the 44,025 BCBAs, 86.16% are female. Based on these numbers alone, one could say our field is lacking in diversity.

So, in a nearly homogenous field comprised mostly of white and/or female providers, surely, they require training about diversity and cultural competency, right? Not exactly. As behavior analysts, we are required to complete a certain number of ethics CEUs each year (BACB, 2017) and these units can be related to cultural competency (ABAI, 2021). Now, I feel it is important for me to interject here: I absolutely love the science of behavior and am passionate about the work I do every day. This post is not to bash my profession, my field, or anyone within it, rather, it is to challenge us to “do better” as a field and community. It is important to note that as a discipline, we have come a long way, but we still have lots to learn, and that is okay.

This, I feel, requires us to look beyond cultural competency training. Of course, there is great value in understanding culture and how it impacts service delivery but that is the starting point. Fong & Tanka propose seven standards for promoting cultural competence in behavior analysis. These include using culturally sensitive methodological approaches, advocating for a diverse workforce, and providing/advocating for services in different languages. Attend a behavior analytic conference and you will find workshops and talks focusing on cultural competency in the workplace (ABAI, 2021), there are podcasts abundant about cultural responsiveness (ABA Inside Track, 2021), and trainings/webinars focusing on the subject are in hot demand. And this is exciting!! But I can’t help but feel like we are still missing something...

Cultural competency is defined by the APA as, “1. possession of the skills and knowledge that are appropriate for and specific to a given culture. 2. the capacity to function effectively in cultural settings other than one's own.” This seems to imply that once you have the skill, you have it. That’s it. But that’s not it. Our relationship with clients and their families is dynamic and there are many contextual factors which may influence that relationship based on culture. One factor is power. We are in a position of power. We are literally being asked to change someone’s behavior, that should never be taken lightly. How can you ensure your services are liberating and not oppressive? Another factor is systemic inequity, injustice, and disparity – They are historically rampant within the realm of healthcare, for example, lack of access/availability to services, unjust research practices, insurance barriers, abuse of power, etc. These factors have cultural implications and must be better understood. 

So how do we do this? Practice listening without expecting to be taught. It is okay to mess up but be willing to use those experiences as an opportunity to learn. It is one thing to understand culture. That is a wonderful place to begin. But to be truly equitable, we must also examine where we exist within the complex and dynamic relations surrounding our clients and their cultures.

References

Behavior Analyst Certification Board. (n.d). BACB certificant data. Retrieved from https://www.bacb.com/BACB-certificant-data.

Behavior Analyst Certification Board. (2017). BCBA task list (5th ed.). Littleton, CO: Author.

Association for Behavior Analysis International. (2021). 47th Annual Convention; Online; 2021.

Fong, E. H., & Tanaka, S. (2013). Multicultural alliance of behavior analysis standards for cultural competence in behavior analysis. International Journal of Behavioral Consultation and Therapy, 8(2), 17.

ABA Inside Track (2021). Episode 152 - (ETHICS) The Ethics of Teaching Cultural Responsiveness. https://www.abainsidetrack.com/home/2021/1/13/episode-152-teaching-cultural-responsiveness

American Psychological Association. (2007). APA dictionary of psychology.

A Closer Look to Disability by Daniela Fanta

Disability is a concept that is generally at least recognized by the population and when listening to it they know in general terms what it refers to. However, we are all unique and we come from different realities, have experienced different experiences and different knowledge.

During my adolescence, I began to feel that my vision about disability was expanding and that I was learning new things because my sister was studying a career in the health area and was being permanently exposed to her new theoretical knowledge and experiences with clients. Years later, when I began to study Speech and Language Pathology, it was my turn to be part of a study program where I had instances of observation, evaluation, and intervention in different settings, with different people and with different disabilities. However, it was not at the university where I experienced disability in a more intimate and close way.

In September 2015, from one moment to the next, my mother lost the hearing in her right ear. Sudden Deafness, that was the diagnosis given by several doctors and according to the results of the tests, it had no apparent cause.

It was from that moment that many changes began in her life. She began to use a hearing aid, daily struggles with a very strong Tinnitus, adaptation to everyday situations in which now the frequency of certain sounds were very unpleasant (for example the sound of plastic bags or the sound of others or even herself dragging the feet on the floor), dealing with people that would get annoyed if she asked them to repeat something in a noisy place like the mall, start learning lip-reading, among infinite other things. Seeing these changes in my mother's life and witnessing how it affected her way of living and relating to the world, led me to be much more awake and alert about what it means to have a disability. Details such as thinking about the best table option in a restaurant for acoustics, the best place at the table for my mother to sit and have her ear with better hearing more accessible to better interact in a conversation, being aware of always being in front of her when talking to her so she has the visual support of the lips, informing and educating those close to her to be aware of their modulation and articulation for better understanding, and something that should be permanent in our society but apparently a constant reminder is not too much: be more tolerant, considerate and compassionate of the needs of others.

My mother is a person whom I deeply love and admire, she has endless virtues, lots of love to give, and wisdom, but what stands out most from her attitude after several years of difficult adaptation (continuous process), is that she has been able to embrace this disability learning to live with deafness and tinnitus.

Picture description: Black and white picture of my mom showing her tattoo of a treble clef with a heart in the center, located on the back of her right ear.

A Shoutout to the Sibs by Ariana Garagozzo

I offered to read my friend’s scholarship essay yesterday. The essay prompt read, “Tell us about yourself. Discuss your long-term goals and why you feel this scholarship will help you materialize them”.

Her first sentence read, “My brother has intellectual disability, autism spectrum disorder, and a rare genetic disorder”.

I froze after reading this.

“My brother has” was used an introduction to a story about her own identity and aspirations. As a fellow sib to a brother who also has autism and an intellectual disability, I felt a wave of familiarity roll over me. This is a story that many sibs know well. The story of being “two peas in a pod” and the story of “I’ll always be there for you.” 

And for most of us, the experience of having a sibling with a disability is overwhelmingly positive. Research shows that sibs of individuals with autism have more family resilience1, more empathy2, and more maturity3. I was in a sib group as a kid and I remember our big, exciting play dates being trips to library so we could check out new books together. The adults in our lives would constantly tell us how well behaved we were. And we wore that label of maturity as a badge of honor. I specifically remember feeling light years beyond kids who were playing “kid games” like cat’s cradle or tag. And ultimately, this maturity and empathy benefited me. I can proudly say I’m now in a doctorate for clinical psychology working with kids who have disabilities.

But as with every part of life, there’s another side to this coin, and one that doesn’t get talked about as much. The ‘other side’ is the idea of the glass children. Glass children are children who appear strong and unshakeable. They are so strong, that people seem to look right through them, like glass. This is because these children’s caregivers have a fixed amount of energy and resources. When there is another child in the home who has significant needs, caregiver resources get disproportionately focused on the child who needs them most. And so, the other children, the glass children, feel a pull for perfection. They do everything needed to resist adding undue stress to caregivers who are already giving so much. And while these children may have the skills to succeed, they may also feel great pressure to care for their sibling, confusion about how to help their sibling, and fear of the future.

As mental health providers, extended family members, community members, and educators, we need to recognize these children and explore their fears, reservations, and hopes. It is unrealistic to place this responsibility solely on caregivers. We need to work together to provide these children space to be confused, to ask questions, to make mistakes, and to be unsure. “Being heard is so close to being loved that for the average person, they are almost indistinguishable” – David Augsburger

(Picture: Young child scrunching up his face while looking through a large magnifying glass)

To learn more about the glass child phenomenon check out Alicia Arenas’ Ted Talk here:

https://www.youtube.com/watch?v=MSwqo-g2Tbk&ab_channel=TEDxTalks

References:

1.      Bayat M. Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research. 2007;51(9):702–714.

2.      Benderix Y, Sivberg B. Siblings’ experiences of having a brother or sister with autism and mental retardation: a case study of 14 siblings from five families. Journal of Pediatric Nursing. 2007;22(5):410–418. 

3.      Green L. (2013). The well-being of siblings of individuals with autism. ISRN neurology, 2013, 417194.

Self-care is not Helpful: Community Care Based on Trauma-informed Principles by Justine Stewart

In a complex world that recognizes the importance of mental health supports, we have come up with a simplistic solution: self-care. Increasingly, mental health services are becoming more available. There are collectives of therapists who make finding affordable therapy easy. Social media has removed some of the barriers between mental health professionals and the people who need help. There are mental health advocates on social media such as Joanna Konstantopoulou who provides psychoeducation and self-help tips. Even the stigma around mental health may be breaking. There are online spaces such as Melanin and Mental Health that battle the stigma around mental illness and therapy. And though psychotherapy and psychoeducation are increasingly accessible, the dominant approach focuses on individual responses to the problem of mental illness. Individual therapy remains the gold standard and the golden child of mental health, but there are alternatives to individual therapy. Self-care and the host of individual-focused responses may have met its match, a seemingly interminable pandemic, COVID-19. 2020 has shown that self-care is not enough for mental health.

Healing on the inside happens in community. Life’s stressors often come from relationships. From the mundane, “I think my boss does not like me” to intimate partner violence. Families can be toxic and we know that the holiday season is not always cheerful. A Muslim woman and community activist, Nakita Valerio beautifully captures the critique of self-care after the 2019 attack in New Zealand on two mosques that ended in the death of 50 people. Nakita had a one sentence Facebook status that said it all, “shouting ‘self-care’ at people who actually need community care is how we fail people.” There are some burdens that cannot be handled alone.

A trauma-informed approach can help us build communities that promote mental wellness. The principles of trauma-informed care (TIC) as outlined by SAMHSA are already being applied in large organizations such as schools and hospital health systems. TIC acknowledges that people can overcome traumatic experiences with supports. A traumatic event overwhelms our coping abilities. Trauma is the past interrupting the present. Rather than asking the individual to heal themselves, a trauma-informed approach designs the space so that it lessens the likelihood of retraumatization, recognizes that trauma reactions occur, allows the individual to reset and responds with supports. Trauma is an individual problem that requires a community solution and TIC can be applied to communities of all sizes.

A trauma reaction does not look one way. For some people, there is hypervigilance and anxiety. For others, there are sensitive to sensory situations. A trauma-informed approach can therefore alleviate a variety of mental health concerns. Here are four principles of TIC that are important for building mental-health friendly communities.

1. Safety: It is important to keep in mind that safety is determined by the community members. Safety is both physical and psychological. Fostering community where people feel that they can bring their whole selves decreases stress.

2. Mutual self-help: Help does not have to come from a professional who appears to have it all together. Creating community of people who have the same struggles as you, helps to normalize your experience. It also means that you can share lessons with each other as you journey.

3. Level power differences: Each of us can have our role in the community. There is the sage, the caretaker, and even the fun one. Hierarchies are not about our roles but differences in power. Unequal power relationships can trigger feelings of unsafety. In more egalitarian models, everyone is recognized as having something to contribute to the community.

4. Recognize cultural, historical, and gender issues: Even in homogenous communities such as a family there are identity differences that should be considered in relationships. In diverse communities, the cultural history is appreciated and considered in interactions.

The kids are not all right by Anjali Rao

I have been worried about the mental health status of the youth in America since the pandemic began.  Let’s face it, many children and adolescents were struggling with diagnosed, or undiagnosed, mental health issues even before the Covid-19 pandemic began.  So, of course the social isolation that has resulted from school shutdowns and social distancing measures have only made this crisis worse.  This hit home for my local community this weekend due to the sudden suicide of our star student athlete.  Despite a personal struggle with depression, he was still able to maintain an exceptional academic record, was being recruited to play football at the college level, and was adored by his classmates.  Then Covid hit and his depression won.  Our community lost.  If this struggling teen, who had access to every resource available to support him, succumbed to his depression, what does this mean for youth with less resources?

As a pediatrician, I work with an underserved population on Chicago’s South Side.  Most of these children attend CPS schools and have developmental, behavioral, and disability issues.  Many do not have the home structure to support remote learning and due to their disabilities, many e-learning platforms as not compatible with their learning supports.  Many of these children have not received any of their prescribed therapies per their IEPs, and some have just stopped attending school.  For these children, school served as a place to foster appropriate social interaction, combat food insecurity with subsidized breakfasts and lunches, provided a safe place to partake in recreational activity, and a source of routine and daily structure.  Without these benefits, all children, especially those with disabilities, are at increased risk of mental health struggles.  The rates of anxiety, depression, and suicide in school-age children and teens is at an all-time high. 

So, what can we do?  As a country, we need to prioritize keeping our teachers safe as they move back into the classroom, allowing students to return to traditional in-person learning.  Teachers need to get prioritized for getting Covid-19 vaccines.  They are essential workers as they are educating future generations.  In addition, Covid-19 vaccines have not yet been approved for use in children less than 16 years of age.  Thus, vaccinating the adults to care for and teach these children is of utmost importance. 

On a local level, individuals can get involved with organizations that support services to those in need.  An organization that I am involved with in my community is CATCH:https://www.catchiscommunity.org/

Ultimately, it will be through crossing the lines of systems-based care to bring healthcare, education, and community organizations together, that we will be able to best provide care delivery to youth with disabilities.  We have our work cut out for us in 2021!

https://www.edweek.org/leadership/childrens-mental-health-emergencies-skyrocketed-after-covid-19-hit-what-schools-can-do/2020/11

https://now.tufts.edu/articles/how-covid-19-has-affected-special-education-students

https://sites.ed.gov/idea/

https://www.chicagoparent.com/learn/special-needs/how-to-plan-ieps-during-pandemic/

Asian J Psychiatr. 2020 Dec; 54: 102273.

Published online 2020 Jul 2. doi: 10.1016/j.ajp.2020.102273