Authoritarianism in Healthcare by Nicole Ann Alberto, Public Health Trainee

I would like to share an interesting article that my Psychosocial professor recommended. It was written by L. Bates titled “Confronting Goffman: how can mental health nurses effectively challenge stigma? A critical review of the literature.” The article discusses the conscious or unconscious perpetuation of stigma towards patients with mental disorders by healthcare professionals within the mental health system.

While the article focuses on describing mental health issues in the United Kingdom (UK), a part of it concerning nurses stood out to me. He stated that nurses who work on the inpatient unit of the psychiatric ward have poor attitudes and are intolerant of patients admitted with mental health disorders. This behavior is worse for patients diagnosed with a personality disorder because of their chaotic interpersonal relationships and sometimes impulsive dangerous behaviors. These stereotyped characteristics together with concerns for safety present as barriers for nurses to relate with these patients. To avoid situations that may trigger the patients’ supposed dangerous behaviors and put the nurses to harm, these patients are discouraged to try new and challenging activities and encouraged to comply and limited to low risk activities to avoid precipitating unwanted reactions or behaviors. While this may present as risk mitigation, it also denies the patients their rights to participate in these activities and restricts opportunities and challenges for growth and recovery.

This writing only focuses on situations involving nurses on a specific healthcare setting but note that there were cases wherein patients with mental health diagnoses who could be discharged and live independently in the community were prevented from doing so due to fear of relapse or the possibility of causing public harm. Instead of giving the patients the ownership of their diagnosis and giving them the ability to manage their own recovery by providing opportunities to exercise their civil rights, the healthcare system including professionals and policy makers would rather hand the responsibility of promoting recovery to mental health services and hope that they are sufficient.

What this problem calls for is a partnership between the service users and the providers of service. The healthcare control should shift from autonomy to promoting involvement and recovery. This means giving the patient the right to decide on their treatment while providing the necessary information, services, and opportunities. Decision making in healthcare involves considering the benefits and harms of a service as well as respecting the patient’s goals, characteristics, values, and preferences. Shared decision making had been proven to increase patient satisfaction that led to better health outcomes, increased compliance with treatment regimens and lower demand for healthcare resources. Empowering the patient while improving the quality of services is a compromise that benefits everyone. To be able to extend that support to patients with mental health disorders, healthcare professionals and policy makers should first see and acknowledge the stigma surrounding these patients.

As I mentioned earlier, this article reviews stigma among mental health nurses in the UK among others. I’m not saying that the nurses and the mental health system in the United States function exactly similar to the UK’s, but the irony of stigma is that it is so prevalent that it does not discriminate between countries and profession. Stigma and stereotypes present in many different forms and in many different places. If you are or you will be working in the healthcare field, whether it be residential care facilities, physician’s office or hospitals, I beg you to please take a step back and reflect. Authoritarianism and healthcare don’t go together. We should be wiser. We should know better.

Article citation:

BATES, & STICKLEY, T. (2013). Confronting Goffman: how can mental health nurses effectively challenge stigma? A critical review of the literature: Confronting Goffman. Journal of Psychiatric and Mental Health Nursing, 20(7), 569–575. https://doi.org/10.1111/j.1365-2850.2012.01957.x

Telehealth and Early Intervention: How Effective Is It? by Pediatrics Trainee Sarah Safdar

Since the start of the COVID-19 pandemic, healthcare systems have largely adopted the use of telehealth to provide outpatient services. This includes office visits, but also extends to therapies provided by Early Intervention. In general, the use of telehealth has been proven to be largely effective for medical appointments, to the point that many healthcare providers across different specialties are opting to continue using it by choice. One reason for this is the convenience factor, with eliminating travel time and reducing possible COVID-19 exposures. However, is telehealth a one-size fits all solution?

In my role as a fellow training in Developmental and Behavioral Pediatrics, I encounter families daily who have children with developmental delays or autism who receive therapies such as speech therapy, occupational therapy, developmental therapy, and physical therapy. Talking with patients and families over the past few months, I have found that a large percentage of families have faced challenges with this system. Many families have opted for their child to stop receiving therapies if they were offered virtually, because it was too hard for the child to focus, so it ended up not being worth it for them. These children are losing out on therapy time in their most crucial years of development; I worry about the long-term effects of this.

I decided to explore this issue further and am conducting my LEND research project on the topic of parent satisfaction of live video visits in early intervention. Since this is a relatively recent issue, I think it will be interesting to collect feedback from families and determine the specific challenges. As virtual visits seem to be here to stay to some extent, having this data might allow us to come up with more effective strategies for how to deliver Early Intervention services. This could include focusing on parent-training for virtual therapies, or requiring certain therapies to be in-person with appropriate precautions. As healthcare providers, I feel that we have to do more to ensure that children are not falling through the cracks of the healthcare system as we shift into the new reality of a post-pandemic world.

The following is a useful guide created by the Early Intervention Training Program at the University of Illinois to help providers optimize therapy sessions conducted via live video visit:

Additional information:
https://eitp.education.illinois.edu/Files/COVID19/LVVtips.pdf

https://emails.illinois.edu/newsletter/788072580.html

Attention Behavior Analysts: A Changing Role by Applied Behavior Analysis Trainee, Amanda Chastain

In recent years, the voices of some consumers of Applied Behavior Analysis (ABA) have been calling for change. While many behavior analysts have begun to make changes in response to these criticisms, we can and should continue to listen and do better. Part of this involves sharing what we have learned with other practicing behavior analysts who are willing to listen. The purpose of this entry is to spread the word regarding one such change: we should no longer be setting client goals solely because of the “social stigma” that displaying or not displaying certain behaviors may cause.

When I was just getting started in the field, I learned that one reason for targeting a particular behavior was that the behavior excess or deficit was socially stigmatizing. The rationale for this was that the child would ultimately suffer if we did not help them correct the behavior, as it would make them stand out against their typically developing peers. I do think this is a reflection of our societal values at the time, and have thankfully seen change occur. However, this change has not yet spread across the entire practice. Knowing what I know now, it is clear that there are major flaws with upholding this societal preference, and I question the ethics of programming based solely on that rule that I once learned. I am sorry to those who I worked with under that assumption, and I am taking this opportunity now to reach those who continue to practice under those guidelines with the hope that you will also learn to do better.

The first thing to understand is that the “norm” that we are holding our clients to is completely made up by those who have held power in society and is what continues to disable members of society. When one is attempting to make someone fit better into the expectations of such a standard, one has to ask themselves, “Who is this benefiting?”. I can promise you that the answer is rarely ever going to be “my client” especially when mental health is taken into consideration. Second, deviation from this norm is expected and is a wonderful thing in terms of the evolution of a species and culture. We should not be generating behavior intervention plans to reduce or eliminate behaviors solely because they deviate from this norm. It is also important to recognize that many of us who are generating the therapeutic programming possess our own biases for what is “normal” which depends on our own cultural background and learning history. Who the heck are we to make this decision for another human being? It is critical that we recognize our own biases, acknowledge them and let them go in this context so that we can keep the values and goals of our clients in mind. 

To put it as clearly as I possibly can - We should never target a behavior solely because it is socially stigmatizing! I am not being naïve when making this statement. I have worked in this field for quite some time now and have seen kids get picked on because they are different. I have seen parents try to protect them or to push for “normalcy” within their own expectations of what normal is. I think this is where we have to remember our purpose and who we serve. I understand that some of these beliefs and practices are embedded within certain cultures, and while we should be sensitive to culture, we should also be discussing ableism and acceptance of neurodiversity with parents who are asking you to target “socially stigmatizing” behaviors that I would argue are unethical to target.

That being said, we have more work to do given the current unfortunate stigma that is attached to difference. It would be wonderful if we lived in a world where being different could always be seen as beautiful, and many are fighting hard for that world. In the meantime, we should support our clients in becoming better equipped for the current world. We should be teaching skills like assertiveness, what to do when someone is bullying them, how to say no or negotiate when they don’t agree, the power of setting and keeping boundaries, skills to identify and work towards their own values and goals, and coping skills to get through those tough moments that every human being has. This is by no means an exhaustive list, nor are these skills that we should only be teaching autistic children or others with disabilities. These are useful skills for everyone. For those with differences that do perhaps carry a stigma in the current world, we should also be keeping an eye out for internal ableism so that we can support them. A growing understanding of the human condition through the science of behavior has given us powerful tools, such as Acceptance and Commitment Therapy, that can offer support in developing a more flexible identity across contexts and a different viewpoint on the expectations put forth by society.

Still, it doesn’t end there. Behavior Analysis is so much more than ABA intervention for those with developmental delays. We are a science of human behavior and have the tools to generate change at the societal level. We should be using our science to alter the discourse around deviation from the norm to create a more accepting world. We need to be working with parents, teachers, and other members of the communities that we work in to teach them that different does not equate to broken or bad. This is a call to action for all behavior analysts to re-think any treatment plan that is in place for the sole purpose of reducing social stigma. It does more harm than good in the long run, and I argue that we have a different role to play in these situations. One that spreads individuality and acceptance. 

Four human body figures all shaded in blue with no features and small pink heart in each body. from left to right - adult woman figure. child girl figure with rainbow oval in head. boy child. adult male with rainbow oval in head. Children figures holding hands. all on green grass and blue sky background.

The Night’s Watch by Danielle Hoffman, Family Advocate Trainee

Well, it’s 2:30am. My shift of the “Night’s Watch” technically ended an hour ago but given my second wind and tendency to want to be the family hero, I have not yet woken up my husband to pass the torch. Despite trying to take one for the team, my 5-year-old daughter will not give me a pass when she wakes up at 6:00am sharp. It all won’t really matter anyways, because we have to be out the door by 7:15am to get to work and school. 

My almost 3-year old son, Rowen, requires a trained caregiver (parent) or a nurse to be awake and alert with him 24 hours a day because he has a tracheostomy and a ventilator to sleep. We are blessed with an incredible team of nurses who have become a part of our family over the past few years. But we are at the mercy of these five individuals who keep our household running. They are the reason we can go to work in the morning and lay our heads down on our pillows at night. The nurses have quite a bit of flexibility in their scheduling and the nursing shortage means that we depend on nurses choosing to pick-up extra shifts. So often our ability to access a basic human need (sleep) is dictated by whether or not Patricia is “on again” with her boyfriend and no longer feels like working Saturday nights or if Thomas needs to save some extra cash for his travel next month.

Our Thursday night nurse has moved to San Diego, so this might be what life looks like for a little while. Sure, the nursing company scheduling wizards will eventually come up with a loosely pieced together, short-sighted solution that might work for a month. But we will soon find ourselves stranded, once again, thankful at least for the month of Thursdays in which we got to sleep.

Night nursing coverage at the Hoffman House is essential. We also have day jobs. Our medically complicated child has a sibling who needs care. Intermittent sleeplessness is surmountable but chronic sleeplessness is impossible. It’s not that I don’t look forward to the occasional night shift. It’s completely quiet in the house, save for the sound of the ventilator gently pushing air in and out of Rowen’s adorable, peaceful, soundly-sleeping toddler body. Sometimes it’s the best time to get LEND assignments done, finally fold that mountain of laundry and maybe even watch something on Netflix that has been selected for viewing without any form of companion compromise. Like every other mom on the planet, I am fully aware that quiet time is to be cherished and so even when it is the middle of the night, I appreciate it.

But then comes the next day. Quite honestly, it’s even the days to come after that. I’m at work and someone is looking to me to make a decision and yet the words coming out of their mouth are just not adding up quite right. Or it is the weekend and I want to capitalize on the two short days a week that we get to spend as a family and so when the kids want to swing at the park, play at the pool, host friends for a bbq with a slip n’ slide and stay up extra late having a special movie night all in the same day, we say yes, but lack the energy to be our best selves in those moments. Those few “bonus” hours in the middle of the night end up impacting our ability to function in a productive manner for days afterward, let alone our ability to react quickly and soundly in the event of a medical emergency, which is essential for our son’s safety.  

Sometimes it feels as if we are in a small boat in the middle of the ocean. In general, the boat is in good, working condition and we have two oars to steer us in the direction in which we need to head. Once in a while it gets a small hole that we are able to repair relatively quickly in order to stay afloat. For a while I thought that Rowen might grow out of his ventilator needs and that we would finally get to dry land and be able to roam freely again. But as time goes on and it sets in that this might be a lifelong journey of in-home nursing needs, it occurs to me that this boat is only going to endure more and more storms and at some point we might be slowly sinking in the middle of the ocean with no one left around to save us.

The reality is, we’re not the only boat out in this storm. There is an extreme nursing shortage across the country and most families like mine haven’t seen respite in months or even years. There is no babysitter option. No daycare. You cannot simply call up the grandparents or the neighbor and ask them to watch your child for a few hours while you catch up on some sleep or step out to grab some groceries. No one else is trained to understand the ventilator and respond to a breathing emergency that could save the life of your child. Forget working if you can’t find a nurse to staff your case. If you rely on Medicaid (which is likely because now you can’t work), the nursing agencies are less likely to staff your case because the reimbursement rate is half of that of individuals with private insurance. Families like mine are often boats in the storm, doing their best to stay afloat.

So what are your options?

The truth is that currently there aren’t many, and the population of children with medical complexities living at home is only growing in size. This is something Dr. Sarah Sobotka aims to fix through her research of the pediatric trach/vent population. This article points to some solutions that Dr. Sobotka has suggested to start alleviating this pressing issue that is directly impacting families like mine. And that handsome smiling boy featured? That is the boy who fills our boat with sunshine and cheers us on as we keep on rowing.

https://www.uchicagomedicine.org/forefront/pediatrics-articles/medical-complexity-pediatric-home-health

To Professionals: Notes On Guiding Parents After an Autism Diagnosis by Ellie Renz

There is no unified response.  Sometimes, there is relief; you see a loosening in their shoulders, a little less weariness in their faces.  They take a deep breath, and it seems like the first full breath in a long time. It might be fear, you may see the worries compound in an instant, the lost look of someone that isn’t even sure what to ask first.  It could be grief, or denial, or devastation, or contentment, or anger. 

When finding out a child is autistic, the reactions will vary.

One often hears parents say, “I wouldn’t change my child for the world, but I would change the world for my child.”  This colloquial phrase begs each of us to ask ourselves the question, “How do I impact the world around me?”  As a clinician, a professional, a human being, how does the way you exist and interact within your professional world affect the lives of the families with which you work?

So, I ask you to reflect.

Pay attention to the language you use. Know preferred terms, and offensive ones, and understand that they may evolve. Be respectful, defer to the individual, and get information from a variety of sources, including (and centering) autistic and disabled individuals themselves. Know that the words you choose to use regarding autism and disability are critical and shape the way families and parents think about their loved ones.  Know that the words you choose mean very little if you do not believe what you are saying.  Understand that your beliefs, perceptions, and true character will show through, regardless of your words.

Give the parents and loved ones facts. Don’t apologize (in words or actions).  Do not walk in with a somber face and say, “I’m so sorry, but your child has autism.” Try not to perpetuate the trope of autism as tragedy.  Explain the diagnosis, the options.  Instill hope.  Talk about the child’s strengths and potential.  Acknowledge fears but do not enhance them.  Do not perseverate on anticipated challenges.  Instill hope.

Provide a range of information in accessible ways. Explain things, check for understanding, and send the information home. Use visuals, give parents links to videos, podcasts, and blogs. Ask parents the mode in which they learn best and amplify applicable resources. Provide information on how to talk about autism to other family members and loved ones. Ask them to tell you when they are overwhelmed with information and take time to check in periodically, too.  Crucially, teach them how to search for resources/information on their own and how to evaluate sources for legitimacy.  They will need more, and you will not always be there.

Depending on the duration and nature of your professional relationship, discuss different models of disability. Talk about the medical model, the social model, and the neurodiversity paradigm.  Explore the impact these models have on aspects of life.

Connect the family with others in the autistic community.  Know the support groups in your area.  Maintain a list of books, websites, blogs, movies, companies, podcasts, videos, and articles created by autistic individuals. 

Be genuine. Parents and loved ones will look to you for guidance, for reassurance, for answers.  While you do not need (or can possibly have) all the answers, be the needed support when possible and direct parents to other support when it cannot be you.

I am asking you to reflect. I am asking you to feel the full weight of the potential impact you have on the parents, children, and families with which you interact, not so you are harmed by the pressure, but so you remember to be intentional in your words and actions. Autistic children will grow into autistic teenagers and autistic adults and are not condemned to a life of tragedy and pain.  Help create a society that fosters the autonomy, dignity, and self-determination of autistic individuals. Life may be different for autistic individuals, but it doesn’t have to be less.

Remember that.

Volition by Amy Satterthwaite, Occupational Therapy Trainee

Of your own volition.

You’ve more than likely heard this phrase and probably understand what it means, but you may not understand its potency.

An important part of my occupational therapy education, and a term my classmates and I have been inundated with since our first day, is client-centeredness. Essentially, this means we will prioritize what is important and meaningful to the client. It also involves the use of our clients’ volition.

Let’s begin by asking ourselves: “what is volition?”

According to Gary Kielhofner, a prominent occupational therapy theorist, volition is the power of choosing or determining. It is synonymous with conscious choice, autonomy, self-determination, and free will. Extending this further, I believe volition refers to decisions and preferences based on deep and personal attachment.

Personally, there’s a lot of things I do that are not of my own volition. I don’t particularly enjoy doing the dishes, checking my email, or paying my credit card bill. In high school, I never wanted to run sprints at practice. And as a kid, I certainly did not complete chores of my own free will. In these cases, I am acting on motivation, not volition.

Let’s break down the difference. Motivation is focused on reward (or in some cases, avoiding punishment). As a kid, receiving an allowance for completing your chores is a reward. Having a clean kitchen is a reward. Volition invokes significantly more than that. Volition refers to an inner desire according to previous experiences, interests, and values. A deep and personal attachment.

I am extremely passionate about occupational therapy. Passionate enough to take out student loans, anyways. I truly believe that occupational therapists can play a large role in improving their clients’ participation in daily life and I want to spend my professional career being a part of that.

Volition, not motivation, is the reason why I often stay up until midnight completing assignments, watching lecture videos, and reading textbooks. I want to become the best OT I can be and because I’m utilizing my volition, I’m able to accomplish much more than if my only motivation was to receive good grades.

I concede, not every task can or will invoke volition. Good luck finding a child that is passionate about doing the dishes. In any case, volition is different for everyone. If you find and utilize volition where you can, whether it’s as an occupational therapist, other healthcare provider, or in your everyday life, you will perform more effectively and joyously.

More on volition:

·       https://www.psychologytoday.com/us/blog/dont-delay/201906/volitional-resource-defeat-procrastination-meaning

·       https://sloanreview.mit.edu/article/going-beyond-motivation-to-the-power-of-volition/

·       https://paintedbrain.org/mental-health/volition-occupational-therapys-unique-understanding-of-the-human-motivation-for-action/

Health and Wellness Academy: More than an “Independent Study” Course at UIC by Physical Therapy Trainee, Elisa Royer

To be honest, I originally joined Health and Wellness Academy (HWA), an elective that provides nutrition and physical activity education to the kids that attend Altus Academy in Chicago, to fulfill a portfolio credit for the DPT program I am a part of at UIC. However, I obtained a lot more than some class credit during my semester in HWA.

Altus is a non-profit, private elementary school that serves the children from minority populations in the Chicago area. The Altus population is mainly made of up children from first-generation college graduate families, minority groups, and low-income households. This institution is made up of 1st through 8th graders who are 63% Hispanic and 37% African American. Altus aims to provide children from historically challenging neighborhoods a fair chance at opportunities with regards to schooling through providing an integrated, liberal arts-based, and project-based education.

I learned not only how to provide the underserved youth of Altus Academy education on nutrition and physical activity that they would otherwise not receive, but I also learned the history behind why I was providing education to these students specifically. I think a lot of time during my undergraduate education, I participated in courses or activities to fulfill a credit, but HWA reminded me of the importance of and had me questioning the “why” behind each course I have since enrolled in.  

During this course, through podcasts, readings, and videos, I learned how several health disparities flourished as a result of the history of extreme segregation that occurred during colonization of major urban areas. The course materials gave me perspective on how Chicago neighborhoods developed, how resources were distributed, and what effects this initial set-up of access to resources continues to have on the members of these communities today.

Based on the health disparities of the members of the neighborhoods that Altus serves, HWA is a course that brings current UIC faculty (HWA is headed by the talented Lindsey Strieter) and students to Altus weekly to address these disparities via prevention and wellness strategies. Each week the hour with the kids begins with a nutrition segment. This includes education regarding food, such as how much water you should drink per day, strategies to fulfill your vegetable requirements if you haven’t had any by lunch time, etc. The course then puts this education into practice by providing students with the resources to make their own healthy snack they can indulge in during class.

The second part of the hour with the students is education regarding physical activity, such as alternatives to playing video games or watching television after school. This part of the hour is also an opportunity for students to learn about and practice different skills for a variety of sports, exercises to target certain muscles in the body etc. At the end of the semester, the students were able to apply what they learned by designing and demonstrating their own exercise program to their peers.

HWA not only gave me the opportunity to learn about how access to certain resources has created health disparities in those of certain populations, but it has also given me a platform to implement strategies to address and attempt to reverse these effects. As a future physical therapist, HWA has given me the resources to explore the wellness needs of whatever community I serve in the future. The course has also given me a foundation of tools to use to implement preventative strategies to promote wellness for those that have a need in the future. 

That said, if you want to take a course for more than obtaining credit hours and have a passion for promoting wellness in the youth of Chicago, I’d register for HWA.

Sources:

https://altusacademy.org/mission-and-vision

This is a Nursing S.O.S. Samantha Lieven, MSN RN

Let me tell you…it has been a wild few years for nurses. We have dealt with some of the most extreme and precarious conditions since the start of the COVID-19 pandemic. Nurses in all different types of settings are being hit hard with a lack of supplies, support, pay, and staff. Since the beginning of the pandemic there has been a massive exodus of nurses not only leaving their jobs, but leaving the profession itself.

One of the hardest hit settings for nurse shortages has been home care. As a nurse who used to work in the home care setting, the amount of staff that was working was already scarce to begin with. I used to work at a children’s group home and respite care that provided care for children with complex medical needs 24/7. I can vouch that even before the pandemic we were always short staffed and the pay was nowhere near what you should be compensated. But at the end of the day who suffers the most? The kiddos.

The COVID-19 pandemic has highlighted the devastating conditions in the homecare setting for families caring for children with complex needs. An article in the New York Times (Alcorn, 2021), stated that almost half of medically fragile children, “had lost home health care services during the pandemic”. These parents are having to become full time caregivers AND the nurse for their children with no extra support or compensation. No sleep. No breaks. THESE ARE DANGEROUS CONDITIONS. The stories portrayed of families’ conditions in the New York Times article by Ted Alcorn are heart breaking. No family should have to suffer and fight just to provide basic needs to their child. They deserve better. This is a nursing S.O.S.

Here are a few resources that help & support families of children with complex needs:

UIC Division of Specialized Care for Children

IL LEND Parent Support Group

The Arc of Illinois  

The Raise Wage Act

References

Alcorn, T. (2021). To keep their son alive, they sleep in shifts and hope a nurse shows up. New York Times. https://www.nytimes.com/2021/06/04/health/nursing-shortage-disabled-children.html

The Basics Behind Reading Interventions for Autism Spectrum Disorder By Rebekah Bosley M.S. CCC-SLP, Speech Language Pathology Trainee

Reading is an activity that has been around for thousands of years and is an integral part of our daily lives. For example, children like to have their favorite storybooks read to them by their caregivers, adults read fiction and non-fiction books for pleasure and work, and college students read textbook after textbook because it is a requirement of being a student. Much goes into teaching an individual how to read; just ask your local elementary teacher. However, unless you are a clinical interventionist, you may not know that reading can be used as an intervention tool to help individuals increase proficiency in language skills such as receptive and expressive vocabulary, comprehension, and language growth. Some speech-language pathologists use storybook reading to target specific speech sounds (see Speech Time Fun's Blog). In this blog, we will focus on a specific reading intervention: Reading to Engage Children with Autism in Language and Learning (RECALL).

Dialogic reading is an interactive style of reading in which the adult works to actively engage the child in storybook interaction. This was originally discussed and researched in the 1980s to 1990s by Dr. Whitehurst and colleagues (Arnold et al., 1994; G. J. Whitehurst et al., 1988; Grover J. Whitehurst et al., 1994). A recent systematic review by Towson and colleagues (2021) found that SIBR overall produced positive improvements in language and communication outcomes in the following populations: children with Autism Spectrum Disorder (ASD; Fleury et al., 2014; Fleury & Schwartz, 2017; Whalon et al., 2013, 2015, 2016), children with Intellectual and Developmental Disabilities such as Down syndrome (DS; Quinn et al., 2020), children with Developmental Delay (DD; Towson et al., 2016) and children with speech and/or language impairment (Wilcox et al., 2020).

Dr. Kelly Whalon and colleagues (Whalon et al., 2015) created a modified version of the dialogic reading intervention called Reading to Engage Children with Autism in Language and Learning (RECALL). RECALL incorporates the hallmark features of dialogic reading, including the CROWD (Completion, Recall, Open-ended, Wh-, and Recall) questions and the PEEP (Prompt, Evaluate, Expand, and Praise) sequence. In addition, the novel features of RECALL include adding two additional question types (Wh-Inference and Emotion Identification), initiation bids, joint attention bids, and a prompting hierarchy. The additional questions, bids, and prompting hierarchy were developed to target areas of difficulty for children with ASD.

The prompting hierarchy was developed with a least-to-most prompting strategy in mind for the child with ASD and included answer options with visuals. For example, the least-to-most prompting hierarchy in which the question (e.g., "What is the dog doing?") is initially asked by the interventionist. If the child with ASD gives no response or an incorrect response (e.g., the correct answer is "running"), then three visuals are provided to help aid in answering the question and the question is asked again (e.g., "What is the dog doing?"). The visuals might include a picture or clip art of a dog running, sleeping, or eating. If the child with ASD does not answer the question, the interventionist continues through the prompting hierarchy by removing visuals as they progress through the hierarchy.

RECALL has since been applied to parents (Whalon et al., 2016) and in a randomized control trial  (Lo & Shum, 2021). More research is needed to determine at what age and frequency RECALL will be effective for children with ASD. Therefore, if you are an interventionist, I recommend looking into the Lo & Shum, 2021 and Whalon et al., 2013, 2015, 2016 studies to see if RECALL might be an effective intervention method for your caseload. Likewise, if you are a parent, I recommend speaking with your interventionist to see if RECALL might be a possibility for your child with ASD.

By: Rebekah Bosley M.S. CCC-SLP, Speech Language Pathology Trainee, Ph.D. Student in Speech Hearing Science Department at the University of Illinois Urbana-Champaign

References

Arnold, D. H., Lonigan, C. J., Whitehurst, G. J., & Epstein, J. N. (1994). Accelerating Language Development Through Picture Book Reading: Replication and Extension to a Videotape Training Format. Journal of Educational Psychology, 86(2), 235–243. https://doi.org/10.1037/0022-0663.86.2.235

Fleury, V. P., Miramontez, S. H., Hudson, R. F., & Schwartz, I. S. (2014). Promoting active participation in book reading for preschoolers with Autism Spectrum Disorder: A preliminary study. Child Language Teaching and Therapy, 30(3), 273–288. https://doi.org/10.1177/0265659013514069

Fleury, V. P., & Schwartz, I. S. (2017). A Modified Dialogic Reading Intervention for Preschool Children With Autism Spectrum Disorder. Topics in Early Childhood Special Education, 37(1), 16–28. https://doi.org/10.1177/0271121416637597

Lo, J. Y. T., & Shum, K. K. M. (2021). Brief Report: A Randomized Controlled Trial of the Effects of RECALL (Reading to Engage Children with Autism in Language and Learning) for Preschoolers with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 51(6), 2146–2154. https://doi.org/10.1007/s10803-020-04692-0

Quinn, E. D., Kaiser, A. P., & Ledford, J. R. (2020). Teaching preschoolers with down syndrome using augmentative and alternative communication modeling during small group dialogic reading. American Journal of Speech-Language Pathology, 29(1), 80–100. https://doi.org/10.1044/2019_AJSLP-19-0017

Towson, J. A., Gallagher, P. A., & Bingham, G. E. (2016). Dialogic Reading: Language and Preliteracy Outcomes for Young Children With Disabilities. Journal of Early Intervention, 38(4), 230–246. https://doi.org/10.1177/1053815116668643

Whalon, K., Delano, M., & Hanline, M. F. (2013). A Rationale and Strategy for Adapting Dialogic Reading for Children With Autism Spectrum Disorder: RECALL. Preventing School Failure: Alternative Education for Children and Youth, 57(2), 93–101. https://doi.org/10.1080/1045988x.2012.672347

Whalon, K., Hanline, M. F., & Davis, J. (2016). Parent Implementation of RECALL : A Systematic Case Study. Division on Autism and Developmental Disabilities, 51(2), 211–220.

Whalon, K., Martinez, J. R., Shannon, D., Butcher, C., & Hanline, M. F. (2015). The Impact of Reading to Engage Children With Autism in Language and Learning (RECALL). Topics in Early Childhood Special Education, 35(2), 102–115. https://doi.org/10.1177/0271121414565515

Whitehurst, G. J., Falco, F. L., Lonigan, C. J., Fischel, J. E., & et al. (1988). Accelerating language development through picture book reading. Developmental Psychology, 24(4), 552–559. https://doi.org/10.1037//0012-1649.24.4.552

Whitehurst, Grover J., Arnold, D. S., Epstein, J. N., Angell, A. L., Smith, M., & Fischel, J. E. (1994). A Picture Book Reading Intervention in Day Care and Home for Children From Low-Income Families. Developmental Psychology, 30(5), 679–689. https://doi.org/10.1037/0012-1649.30.5.679

Wilcox, M. J., Gray, S., & Reiser, M. (2020). Preschoolers with developmental speech and/or language impairment: Efficacy of the Teaching Early Literacy and Language (TELL) curriculum. Early Childhood Research Quarterly, 51, 124–143. https://doi.org/10.1016/j.ecresq.2019.10.005

The exclusionary criteria and the bridge between Intellectual Disabilities and Serious Mental Illness by Magdelene Thebaud, Social Work Trainee

As an MSW student intern, I have been given the opportunity to do my clinical practice in an inpatient psych department. Here we see medically cleared patients that were referred from the ER who have ‘Serious Mental Illness.’ According to the American Psychiatric Association “Serious Mental Illness (SMI) is defined as someone over the age of 18 who has (or had within the past year) a diagnosable mental, behavioral, or emotional disorder that causes serious functional impairment that substantially interferes with or limits one or more major life activities.”

Hospitals and agencies all have their requirements and “exclusionary criteria” as to whom they can admit into their departments. Sometimes these exclusionary criteria can seem to be non-inclusive of patients who need that help most. Often times, individuals with intellectual disabilities are excluded from receiving the care that they need because of their mental health problems are not due to a brain chemical imbalance but by a behavioral problem. I experienced seeing individuals get turned away from mental health assistance because the medical professionals could not treat their behaviors with medication. This type of perspective limits the care and needs for those who do have intellectual disabilities and a serious mental illness. In Illinois, there are even laws made that make sure that these exclusionary criteria are not imposed.

“(405 ILCS 5/2-100) (from Ch. 91 1/2, par. 2-100)
    Sec. 2-100. (a) No recipient of services shall be deprived of any rights, benefits, or privileges guaranteed by law, the Constitution of the State of Illinois, or the Constitution of the United States solely on account of the receipt of such services.
    (b) A person with a known or suspected mental illness or developmental disability shall not be denied mental health or developmental services because of age, sex, race, religious belief, ethnic origin, marital status, physical or mental disability or criminal record unrelated to present dangerousness.
(Source: P.A. 86-1416.)”

However, it still is not applied in all the different agencies. How do we “check” these agencies that they don’t decline individuals because of their intellectual disabilities if they present with a mental health problem.

Part of the research that I get to partake in the LEND fellowship is bridging the gap between intellectual disabilities and mental health. Cognitive behavioral therapy has a history of not addressing the needs of individuals who have autism. Honestly, there is just a serious lack of research on these populations and mental health in general. Working with Dr. Kristin Berg on the BEST project, our research team gets to provide workshops to families with children with disabilities and a mental illness.

Resources

What is Serious Mental Illness? | SMI Adviser

https://www.ilga.gov/legislation/ilcs/ilcs4.asp?DocName=040500050HCh%2E+II&ActID=1496&ChapterID=0&SeqStart=5000000&SeqEnd=8000000

Benefits and Considerations of Increased Telehealth as a Result of COVID-19 by Morgan Stutts, Psychology Trainee

When I first realized the majority of my clinical placement was going to be done virtually, I was disappointed. After my last year had been spent entirely on Zoom, I was so tired of the idea of spending even more time meeting virtually. I had also been excited to develop in-person connections, and the idea of telehealth was daunting. However, both through my program and of telehealth programs more broadly, I had heard that the use of telehealth this past year had allowed for meeting with individuals that may not have otherwise been seen, for a variety of different barriers of accessibility. So, with both my fear and optimism, I began my first attempt at telehealth.

Since beginning my clinical practicum in autism assessment, not only have my nerves about providing virtual healthcare settled for the most part, but my appreciation for telehealth has also increased immensely. The switch to Zoom appointments has provided the opportunity to connect with patients who would typically not consider visiting us hours away, to attend appointments, in addition to lessening the burden that attending multiple appointments may add for individuals and families. And while I often encounter situations where I feel something may be much easier to do in person, I am so grateful that this option can be provided to those who benefit from it.

In reflecting on my own personal experiences this semester, I’ve thought more about virtual healthcare more broadly and what the future of telehealth may be. The rise in telemedicine has resulted in increased access to services that individuals may not be able to otherwise receive.

However, while there is already a myriad of barriers to accessing healthcare — difficulties with obtaining transportation, having childcare, and limited providers nearby1,2 — telehealth brings additional barriers. To engage in such virtual appointments, individuals typically need access to devices and Wi-Fi. Virtual appointments have created opportunities for individuals to attend meetings that may not otherwise be feasible, however providers will have to keep in mind these novel barriers when engaging in telehealth services. I am hopeful and excited to see how the use of virtual appointments will lead to increased accessibility in the future.

1 Ahmed, S. M., Lemkau, J. P., Nealeigh, N., & Mann, B. (2001). Barriers to healthcare access in a non‐elderly urban poor American population. Health & Social Care in the Community, 9(6), 445-453.

2 Brems, C., Johnson, M. E., Warner, T. D., & Roberts, L. W. (2006). Barriers to healthcare as reported by rural and urban interprofessional providers. Journal of Interprofessional Care, 20(2), 105-118.

Regina, Always Liked You Best by Kayleigh Geisse, Physical Therapy Trainee

After an exhausting day, I walk into my parents’ house and I am instantly greeted by three rambunctious dogs, hungry for both food and attention. I let the dogs out and I watch them chase an unsuspecting squirrel in vain. Suddenly, I hear a low whine from the back of the house. Confused, I go to investigate. As I get closer to the bedrooms, the faint whine becomes the distinct sob of someone in pain. I pick up my pace; somehow, I know the source of the noise. I throw open the door, sprinting in, and I see Regina prone on the ground, a thin stream of blood flowing down the side of her face where her now broken glasses had once been, her walker just out of reach. I try my best not to cry as I help her up and back into bed.

My older sister, Regina, was diagnosed with Huntington’s Disease (HD) as I was finishing high school. As a progressive neurodegenerative disease, her symptoms were initially mild and while she moved back into my parents’ house, I left for another city to study Psychology. I had casually researched the disease, so I knew the facts: her life expectancy after diagnosis was short and her cognitive, physical, and functional abilities would eventually decline to a point where she would be confined to a bed, unable to speak. By the time I graduated college, her symptoms had worsened; she was struggling to walk on her own, and she was using a rollator walker for all her daily activities. At the time, my mother was her only caregiver, so I made the decision to move home to help as my sister continued to lose her independence. I spent the first few month’s volunteering at the Indianapolis Humane Society while learning more about HD and what my sister’s future held. I saw the frustration and the agony in her eyes when she had to ask me, her younger sister, to help her use the bathroom and perform simple daily tasks. I did my best to help her, but as the months progressed, I began to feel increasingly underqualified and ill-equipped to assist. I became frustrated myself because I did not have the tools necessary to help my own sister.

While HD has no cure, there are benefits of a therapeutic regimen to manage physical symptoms and improve quality of life. We began to reach out to home health aides, mobile physical therapists, occupational therapists, and speech pathologists to help with those daily tasks. In the months that followed, a team of healthcare professionals were at our house daily, and I saw each one of them work tirelessly to help Regina as her cognitive abilities continued to decline. Over time, Regina began to repeatedly ask about a specific provider, Sergio. Each morning, she would start the day by asking if “Sergio the PT” was coming today. On the days he did come, she would brag endlessly about how far she had walked with him or for how long she could stand up. On those days, her mood elevated tremendously, her pain lessened, and she was able to sleep through the night. Undoubtedly, Sergio has been able to prolong her independence and improve the quality of her everyday life.

This led to several conversations with Sergio about his profession - how improving the daily lives of others has helped him live a more fulfilled life himself. I began to explore physical therapy along with other health care professions, continually thinking about Sergio’s impact on Regina. Every visit, Regina continues to praise Sergio. Even with her continued declining abilities, his effect on her life is ever-present. Despite time spent with physician assistants, veterinarians, and other providers, I consistently returned to the impact that a physical therapist has on the lives of their patients, and the relationships formed during the therapeutic process. I knew where I belonged in the realm of heath care.

I have always had a strong desire to help people which led me to study psychology in undergraduate, providing me with a unique understanding of others’ thought patterns and behaviors. Returning to take outstanding undergraduate DPT prerequisites in a new city presented novel challenges demanding that I strike a balance between work, familial obligations, and studies. While studying psychology, I discovered that I am a verbal and visual learner, thus finding a solid support network from my new professors and fellow returning students including forming informal study groups was pivotal to my success. My specific fascination in human anatomy and physiology evident, I was granted the opportunity to teach a human physiology laboratory class the following semester. More than I thought I would, I loved teaching and being able to share my knowledge with others. Promoting a student’s growth in their medical education by facilitating the lightbulb moment of fully comprehending the complexities of difficult concepts, like cardiology, has been one of the most rewarding experiences.

Every sit to stand, every transfer to the toilet, every spoonful of food I assist with, Regina utters a soft, yet sweet “thank you.” Whilst seemingly miniscule of tasks, these gratitude’s have become increasingly meaningful. Caring for a family member with a disability teaches patience, humility, and altruism. It truly makes you appreciate one’s independence and prolonging it. These qualities are necessary for success for any healthcare profession but specifically important to connect with patients in the physical therapy field. To me, becoming a physical therapist provides an opportunity for continual personal growth and medical education to help diagnose, promote movement, reduce pain, restore function, prevent further disability, educate, and help those in need. Through each PT shadowing opportunity, I discover new branches of physical therapy that I am eager to pursue. I am excitedly navigating through DPT school to determine which path will allow me to most benefit others by prioritizing a caring patient relationship and providing the best therapy to patients like Regina for whom it means so much.

Above are two pictures of two sisters, one standing with long curly brown hair and one seated with short straight brown hair, feeding a giraffe a carrot.

Respect for Individual Identity through the use of Language in Clinical Practice by Julia Clearman, Psychology Trainee

Not long ago, I sat in the back of a classroom listening to a student lecture on Autism Spectrum Disorder (ASD). My view from the back of the classroom gave me a sort of observational vantage point in which I could take in individual reactions and notice how other students responded to the information being shared. The student speaker had obviously done a considerable amount of preparation for the lecture and shared statistics about etiology, diagnosis, treatment, and such. However, I still felt myself begin to bristle internally. This well-intending student was following a deficiency-based language to discuss Autistic individuals. Language usage in this way had a distancing effect between those carrying a diagnostic label and everyone else. As I shifted uncomfortably in my seat, I wondered why the language that was being used was so off-putting to me and how I had come to understand the strengths-based approach when considering disability. 

Early on in the IL-LEND experience, we reviewed the use of language using a person-first or identity-first model when engaging in conversations with and about disabled people. There were several different ways of considering these other models. Individuals seemed to prefer one way or another depending on how it was used, for what purpose it was used, and what type of tone the language was presented in. The takeaway, however, was that different individuals had different preferences for using either a person-first or identity-first model when discussing disability. 

After these early experiences in IL-LEND with the person-first or identity-first model, I called up a close friend with a disability. 

“Sarah (pseudonym),” I exclaimed, “you have to tell me what you think about these models!” 

After some discussion, my friend dropped some golden wisdom that has stuck with me ever since.

“Well,” she said, “I guess I prefer person-first language when other people are discussing my disability with me. It is obvious that I have a disability when you look at me, but I am not just my disability. There is so much a part of me that is not my disability.”

We discussed more details about her lived experience with a disability and the reactions and words she has had to endure over the years. When I hung up the phone, I walked away with two deep impressions. First, the use of language matters. Language is linked to identity and has the power to be positive and/or discriminatory. Second, the use of person-first or identity-first language seems to differ across disabilities and individualized preferences.

So, as I sat in the back of that classroom thinking about my IL-LEND experience, person-first or identity-first language, and the honest conversation I had with my friend about the lived experience of disability, I realized that I was upset with the lecture because the language being used lacked respect for those carrying an identity of ASD. Also, I recognized the power of language choice again. 

These experiences and feelings got me thinking. Here I am, in a doctoral program in a health-related discipline, and the language choices I select influence those around me – not only my patients but also my fellow clinicians-in-training, colleagues, and community. 

What would it look like to build into my clinical practice, community engagement, and/or individual conversational exchanges a purposeful language of respect and consideration of person-first or identity-first choices? 

How could I shape my own use of language to understand individual preferences as I grow into a practicing clinician?

While I am still working out exactly how these questions can be answered in my daily exchanges, the point is that I am continuing to work out answers to these questions and carefully watch my own use of language to be more respectful to those with disabilities. 

What would healthcare look like if we all committed to this change?

- JC

More resources:

https://psycnet.apa.org/record/2015-03427-001

https://link.springer.com/article/10.1007/s10803-020-04858-w

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6371927/

Why isn’t LEND a part of all Pre-Health Professional Schooling? By Claudia Piatek, Physical Therapy Trainee

I was ecstatic when I received the news that I was chosen to be one of the LEND trainees from my discipline, Physical Therapy. I am interested in going into the Pediatric PT field thus LEND seemed like an amazing program that would gear me with additional information and resources about working with children/ individuals with various disabilities that I would undoubtedly work with upon completion of my schooling. However, when I say “additional information and resources,” at this point I mean “only” information and resources.

Having been in LEND for almost a whole semester and almost completing my pediatric PT course, I am stunned by how little overlap there has been with information shared in LEND and in that course. LEND has taught me an immense amount that I would never have known had I just taken this pediatric PT course. We have had just one guest lecture about school-based PT in which IEPs were discussed in very little detail, while in LEND we have received a wealth of IEP information as well as done case studies on different IEPs. We have had no lecture about language and what type of language to use with parents of and patients who may be neurodiverse or physically disabled.  In fact, I don’t think that I have seen or heard the terms neurodiverse or neurotypical used in any of our lectures. Instead, they are populated with language such as “normal” vs “abnormal.” While this may be necessary in the PT field to make comparisons and come up with interventions, it is not overtly stated for other members of my cohort that this type of language should not be used with parents and children. Thankfully, we had a speaker talk about the “strengths based approach/language”  in LEND and this has emphasized the importance of positive language for me I will make this a priority in my practice moving forward.

By writing this I am not trying to talk down on my program. It is a great program and I have been learning so much. In my program and other PT programs across the country, there is definitely room for improvement especially considering there are other students who are interested in pediatric PT, but are not a part of LEND. They may not learn some of the information that I’ve learned until they are on the job, or they may never learn it, which would put them and their patients at a disadvantage. Regardless, I am extremely grateful for being in LEND, and wish that this wealth of extremely important information and resources was more accessible for other students in pre-health programs, whether they know they have an interest in it or not.

Culture Brokers: Bridging the Gap between Culturally, Linguistically, Economically, Diverse (CLED) families with children with dis/abilities and Special Education services

https://www.shutterstock.com/image-photo/top-aerial-view-famous-golden-bridge-1926545249

(Picture: containing sky, outdoor, mountains, and bridge being held up by hands)

It has been a little over 50 years since the ruling of Brown v. Board of Education (1954) allowed individuals of color to intermingle and learn alongside their white peers in public education institutions in the United States. Similarly, special education has only been officially around for a little under 50 years since the passing of the All Handicapped Children Act of 1975 (EAHCA; renamed IDEA in 1990) which provided opportunities for individuals with dis/abilities to attend public schooling and receive a free appropriate public education (FAPE). Within those 50 years, the U.S. educational system has played both the intricate role of protagonist and antagonist in providing special education services to children with dis/abilities and their families who are also individuals of color (Harry, 2008).

Currently, students from Culturally, Linguistically, Economically, Diverse (CLED) communities make up around 50% of students receiving Special Education services in the public education system (OSEP, 2018) Schools and districts are tasked with providing the essential resources and support for the growing population of students from CLED communities in Special Education. Yet, this population of individuals and their families have been overwhelmingly understudied and under resourced.

The solution for bridging the disconnection between these two systems, Culture Brokers! Individuals working toward supporting CLED families as they navigate the education system and their intersectionality of being people of color, from varying cultures, who speak different languages, with disabilities (Mortier et. al, 2020). Cultural brokering is an intervention that supports “any advocate who engages in the purposeful act of connecting people of differing cultural backgrounds to improve collaboration” (Rosetti, et. al, 2018).

Through Culture Brokers, communities can begin developing a foundation for relationship building of partnerships with all stakeholders (families, school professionals, policy makers, etc.) with students as the focal point! Cultural Brokers can facilitate resources, conversations, and advocacy for families who require the support. Cultural brokers can translate paperwork, interpret at meetings, find local resources and agencies, be a support system, help navigate the IEP process, explain safeguards and rights, and communicate with school professionals. Anyone can become a cultural broker with appropriate training in Special Education services (e.g., Volunteer Advocacy Project) as well as Cultural sensitivity and responsiveness (e.g., Trauma-informed, Courageous Conversations, BeWelltools). Other skills that can benefit cultural brokering: 1) fluency (written and verbal) in the native languages spoken, 2) familiarity with the community and its’ members, 3) self-reflection of one’s own biases and strengths.

by Special Ed Trainee, Edwin Monárrez

Resources:

https://sites.ed.gov/idea/osep-fast-facts-race-and-ethnicity-of-children-with-disabilities-served-under-idea-part-b/

Brown v. Board of Education, 347 U.S. 483 (1954)

Mortier, K., Brown, I. C., & Aramburo, C. M. (2021). Cultural brokers in special education.

Research and Practice for Persons with Severe Disabilities, 46(1), 3–17. https://doi.org/10.1177/1540796920975386

Rossetti, Z., Redash, A., Sauer, J. S., Bui, O., Wen, Y., & Regensburger, D. (2018).

Access, accountability, and advocacy: Culturally and linguistically diverse families’ participation in IEP meetings. Exceptionality. Advance online publication. 19 June. https://doi.org/10.1080/09362835.2018.1480948