Putting the “Therapy” Back into Physical Therapy by Kiley Hunt, PT Trainee

(Image includes a doctor and a patient sitting at a table. The patient is wearing an orange shirt and the doctor is wearing a white lab coat. The patient is talking, and a question mark is above his head, signifying that he is wondering if the doctor is listening. Courtesy of: Ian Conger)

“The other doctors wouldn’t even listen to me.” 

This is a heartbreaking phrase to hear, not only as a clinician, but as a human being. Yet, it is one of the most common phrases I hear as a physical therapy student. People often feel their doctors spend too little time with them or disregard their opinion. Many patients with chronic disability enter rehabilitation clinics frustrated and emotional after feeling unheard for so long. Rehabilitation therapists consistently spend 30 minutes to an hour with their patients, and this often facilitates strong patient-clinician relationships. From my experience, patients feel safe talking to therapists about their physical and mental struggles, and after a few sessions, people often love sharing stories about their personal lives. One of the most memorable physical therapy situations I have experienced was related to a mother bringing in her child who was diagnosed with Cerebral Palsy. She frequently attended sessions with her child, so the therapists had built a positive relationship with her and immediately welcomed her into the clinic. The mother settled in and broke down right away, expressing how overwhelmed she was with her child’s healthcare, bills, and responsibilities. While this made my heart ache for her, the first thing I thought was, “Am I even qualified to give her any advice?”. I had no mental health training and neither had any of the other therapists in the room. We had no way of helping her in any professional way besides referring her to see someone on her own time. 

              In the United States, 1 in 4 people have a disability, and many people will experience some sort of disability in their lifetime, whether it's temporary or permanent. Within this population, adults with disabilities are five times more likely to experience mental distress than adults without disabilities. In 2018, 32.9% of adults with disabilities experienced frequent mental distress, and many studies have shown that these statistics are only on the rise after the COVID-19 pandemic. When it comes to caregivers, studies show that 79% of caregivers of children with intellectual disabilities are at risk for clinical depression. Parenting a child with neurodevelopmental disorders has been shown to correlate with higher levels of anxiety, depression, and stress. Some studies show even higher risks of depression and anxiety in parental caregivers who struggle financially, making lower socioeconomical families at a high risk for mental health concerns. Unfortunately, most individuals with disabilities and their caregivers do not have sufficient access to mental health resources. With the constant doctor appointments, school, and therapy sessions, most people don’t even have the time to schedule appointments with a psychologist. This is especially true for children with disabilities, who must rely even further on their parents' work schedule. Also, the health professionals that people with disabilities interact with on a regular basis often have no mental health training to offer to their patients during treatment sessions, forcing them to find it elsewhere. Lastly, people with disabilities and their parental caregivers are dealt significant medical bills, medical equipment costs, and many other accessibility costs that come with disability such as accessible transportation. So, to expect family caregivers or people with disabilities to spend even more money on mental health services almost feels unfair when they already see so many medical professionals in any given month. 

              All of these reasons reinforce the importance of mental health training for physical therapists. Physical therapy is a career that requires pushing people through their physical struggles, and therapists are often recruited to a person’s medical team after some sort of physical decline or impairment diagnosis. This can be a very emotional time and having a therapist that can work on helping you physically and mentally could be especially helpful. We also know that mental health and physical health go hand in hand. It has been shown that depression increases risks for physical health complications such as diabetes and heart disease. This means that psychological training for physical therapists could not only improve their patient’s overall health, but it could help improve their clinical outcomes as well. This also shows that being able to assist caregivers in their mental health struggles can improve their physical health, which will improve both their quality of life and their ability to continue to care for their child. Overall, mental health is healthcare, and by leaving this out of our treatment sessions, we have forgotten to treat the most important part of each person. In the future, hopefully we can change the catchphrase from “My doctor didn’t even listen to me” to “I have never felt more heard”. 

https://www.cdc.gov/ncbddd/disabilityandhealth/features/mental-health-for-all.html

https://www.abilities.com/community/disabilities-mental-health.html 

https://www.cdc.gov/mentalhealth/learn/index.htm 

https://www.hindawi.com/journals/ijfm/2011/534513/

Autism in Medical Education- Does it exist? by Medical Trainee, Rebecca Spasari

As a fifth year Child Neurology resident, I am completing my ninth year of medical training after graduating college. While finishing this process and beginning my experience with LEND, I cannot help but think about how difficult it has been to find resources that allow me to prepare for caring for people with disabilities up until this point. During my first year of medical school, after completing a week-long course on cystic fibrosis, a condition that impacts 1 in 3,000 white newborns and is even more rare in non-white populations, we spent an hour learning about both ADHD and autism , conditions that each affect many more individuals. The National Health Interview Survey (NHIS) had the prevalence of ADHD in children 4-17 years old as around 10.2% of the population in 2016 and the CDC reported that in 2018 that the prevalence of autism was 1 in 44 children. I remember angrily googling these statistics at the end of the lecture and feeling so hopeless. I continued searching for the disability education I wanted and found some during my pediatrics rotation. I loved neurology and was planning to care for adults with disabilities with a focus on autism through a neurology residency. I told one of the adult neurology residents this and she responded, “we don’t do that – maybe you should do pediatric neurology.” A brief panic attack followed as it was close to residency application time, but it led me to the pediatric neurologist at my medical school who fortunately had a passion for caring for autistic adults.

I came into medical school knowing that I wanted to complete my training and care for people with disabilities, but most people come into medical school not knowing what they want to do and use the training received to pick a specialty. When thinking about the long waitlists to see child neurologists, developmental behavioral pediatricians, and child psychiatrists because of workforce shortages, I wonder if this is because of the way we are taught from our first year of medical school. How would someone develop an interest in autism if they have barely heard about it? I received most of my training on autism in pediatrics rotations and with the child neurologist. It was very clear to me throughout my training that there was a perception that only pediatricians need to know about autism.

There have been studies on trainee knowledge of autism that have shown shocking limitations of graduating medical students and residents. One study at the University of Alabama looked at medical students and pediatric residents and their comfort with caring for a child with autism in an acute care setting. It found that in both pediatric residents and medical students, more than 85% of responders felt less than somewhat informed on management of acute illness in autistic patients. In other words, only 15% of pediatric residents and medical students felt comfortable taking care of autistic patients. There have been other studies based on surveys of pediatric residents, but studies have not focused on the knowledge base of adult practitioners. Based on my experience, I suspect the results would be quite alarming. There have been efforts to create a curriculum for clinicians including the Autism Case Training: Developmental Pediatrics Curriculum which has been piloted in several pediatrics residencies with success. This is very exciting change in the right direction. The next step should be moving this curriculum earlier in training to the medical students so that all future providers will know that no matter what specialty you choose, you need to learn about autism. I think this early introduction can also serve as a form of recruitment to convince medical students to pursue disability focused specialties that have waitlists that last longer than a year.

References:

1.    AMA J Ethics. 2015;17(4):318-322. doi: 10.1001/journalofethics.2015.17.4.medu1-1504.

2.    Austriaco, Kristine, et al. "Contemporary trainee knowledge of autism: how prepared are our future providers?." Frontiers in Pediatrics 7 (2019): 165.

3.    Dhuga, Yasmin, et al. "Developing undergraduate autism education for medical students: a qualitative study." BMJ paediatrics open 6.1 (2022).

What’s all the hype over AAC devices? Written by Amanda Goldstein, SLP LEND Trainee

Hi! My name is Amanda Goldstein, and I am a graduate student in the field of Speech-Language Pathology. Welcome to my blog post! Throughout my undergraduate experience, people continued to ask me what an “AAC device” is and why I wouldn’t stop talking about it. So, today I am here to explain it!

AAC stands for Alternative and Augmentative Communication, referring to an inclusive form of communication that encompasses more than just oral speech. As ASHA describes it, augmentative means to add to someone’s speech and alternative means to be used instead of speech.

There is a great range of different types of AAC including sign language, gestures, picture symbols, speech generating devices, and more. AAC devices can be used by many different people who have many different needs. AAC devices are commonly brought up when discussing autism, as may autistic individuals do not use oral speech; by providing these individuals with AAC devices, they have a platform for communication. Additionally, people with degenerative diseases such as Alzheimer’s disease, Parkinson’s disease, or Huntington’s disease may benefit from using an AAC device if they begin to lose motor speech; by providing them with an AAC device, they will also have a platform to communicate. Moreover, stroke patients or patients with Traumatic Brain Injuries (TBIs) can be introduced to an AAC device to have an accessible form of communication before regaining motor speech musculature. The list can go on and on but ultimately it should be the user and their family’s decision. A common way to categorize AAC devices is by separating them based on “low tech” “mid tech” and “high tech”, so that is what I have done to provide some explanations and examples.

Low Tech AAC

Low tech AAC refers to a method of communication that isn’t electronic but requires some equipment. This option may be utilized because it can oftentimes be quicker to learn how to use a low-tech device. Additionally, there are less distractions that come with working with a low-tech device. On the other hand, these devices may also be limited in giving the user flexibility in terms of what they can communicate. Examples of low-tech devices include a communication book made up of many pages with photos, a pen and paper, an alphabet board, and symbols written down on different index cards. In these methods, a user can select what they want to express by pointing to photos or symbols.

Picture: an example of a communication book taken from https://www.communicationcommunity.com/aacfileslowtech/

Mid Tech AAC

Mid-tech AAC devices are electronic devices that are battery operated. These devices are more complex than low-tech AAC devices but not as complex as the high-tech AAC devices. Someone who’s looking to work with a high-tech AAC device could start off with one of these and then progress to a high-tech device. An example of this is “GoTalk” which is a pre-programmed device that can messages based off the user’s selection.

Picture: an image of “GoTalk” taken from https://www.communicationcommunity.com/aacfileshightech/

 High Tech AAC

High tech AAC devices are the most complex form of AAC devices, consisting of electronic devices with quite advanced functions.  This could be in the form of an iPad that has many different pages and sections, whereby the user has more options and flexibility in what they can express. These have become so high tech that some AAC devices can be utilized by an eye gaze to control speech. This is very helpful in users who may be paralyzed or have minimal limb movement.

Picture: Stephen Hawking using a high tech AAC device that he controlled with his eyes taken from https://www.communicationcommunity.com/aacfileshightech/

Something worth noting is that I mostly highlighted the benefits of these devices; however, there are also many limitations to consider. For instance, some individuals might not have access to internet that is required with some devices. Additionally, some of the devices may be prone to accidents if getting dropped, getting wet, etc. Moreover, it can be difficult and frustrating for clients to have to always remember to have an AAC device on them to communicate. The examples I provided are also not an exhaustive list and I’d encourage you to do some exploring if you’re interested! Lastly, it is pivotal to think about how the users of these devices are included in the design of the devices and how we can enable them to become more part of the process.

References:

https://www.communicationcommunity.com/aacfileshightech/

https://www.communicationcommunity.com/aacfileslowtech/

https://medium.com/@dmahmarian/a-history-of-autism-and-aac-9a2b321b01f0

https://allaboutaac.wordpress.com/about-aac/3-2/

“Learning Disabilities: A Tale of Two Perspectives” By Colleen Rusciolelli, Developmental and Behavioral Pediatrics Fellow

(Picture: Dark blue background with different sized blue spheres with central black holes. Courtesy of: https://earthsky.org/astronomy-essentials/definition-what-is-dark-matter/)

“This isn’t done! This isn’t done! This is incomplete! He is reading well below grade level.” As my husband and I sat across from my son’s first grade teacher I tried to contain myself from yelling back. “THEN WHAT IS HE DOING?”  It just wasn’t making sense. This was the child that asked me if I could explain “dark matter” to him a few weeks prior (something I promptly googled and still am not sure I can accurately explain). This was the child that drew a Pangolin (pre-COVID19) as his favorite animal the first week of kindergarten and had to explain to his teacher that he was in fact saying pangolin not penguin (also worth googling-they are quite interesting). Things were not adding up. As a mother I was worried, frustrated, and sad.  As a pediatrician I was asking myself how I missed this. 

            As a pediatrician, the checklist started going off in my head. He needs to be evaluated for Attention Deficit Hyperactivity Disorder (ADHD), he needs to get a school evaluation to see if he needs an Individual Education Plan (IEP). Should he see a developmental pediatrician? As a mom, I just wanted to give him a great big hug and let him know it was going to be okay. How stressful it must be to sit in a classroom where things were not making sense, being constantly corrected and feeling not good enough. He was diagnosed with ADHD but didn’t qualify for an IEP because although his reading was behind “it wasn’t delayed enough” (story for another blog). I received great advice from a close friend, a mother of four, and a developmental pediatrician (yes in my eyes she is a bit of a rockstar). She said he could have a learning disability and you should get further testing. She was right, several months later he was diagnosed with dyslexia. We got him connected with an amazing reading specialist in our community who used evidence based techniques which his brilliant brain latched onto. Now, several years later we can’t pull his head out of a book and he is reading well above grade level and still asking me questions I need to google.

Why am I sharing this? I want others to know a lot of times ADHD doesn’t occur in isolation. Learning difficulties can be seen in up to 50% of children diagnosed with ADHD. They are also more at risk for other conditions such as depression and anxiety. You have to look at and treat the whole child for them to thrive. As a general pediatrician, I was trained to evaluate, diagnose and treat ADHD. I was not trained to diagnose learning disabilities and unfortunately we don’t have consistent screening systems available and rely heavily on schools to pick up learning disabilities-something that needs to change. Learning disabilities pose a major threat to a child’s short and long term health and need to be treated as such.

Finally, of all learning disabilities, dyslexia is most common and affects up to 20% of people. We need to examine how schools are teaching our children to read. We need to ensure all schools are supporting their teachers and students by providing training and instituting an evidence based reading curriculum proactively. First you need to learn to read so that you can read to learn.  Lastly, as a pediatrician, a mom, and the daughter of a retired children’s librarian-go check out your local library. They have amazing programs and resources for children (and adults) and are often a source of wonder and awe for all ages.

References:

Sanfilippo J, Ness M, Petscher Y, et al. Reintroducing Dyslexia: Early Identification and Implications for Pediatric Practice. Pediatrics. 2020;146(1):e20193046

https://www.additudemag.com/half-of-all-kids-with-adhd-have-a-learning-disability-or-related-condition/

https://www.nytimes.com/2022/09/01/opinion/us-school-reading.html

Great resources to check out:

https://dyslexia.yale.edu/dyslexia/dyslexia-faq/

https://www.readingrockets.org/article/learning-read-reading-learn

https://reachoutandread.org/what-we-do/resources-2/

https://www.chipublib.org/kids/

The Climate is Changing, and so Should We! by ABA Trainee, Meredith Matthews

Every article written on the topic of climate change appears to begin in the same way: Global surface temperatures are rising, the ice sheets are shrinking, weather patterns are changing, and human behavior is likely to be the one to blame. While it is important to disseminate the research on topics such as climate change, the conversation needs to shift from talking about who has caused the overall warming to who is going to respond to the overall warming.

Applied behavior analysis (ABA) is a science that is focused primarily on improving specific behaviors and is one rooted in empirical research. ABA then applies these concepts to understand and work within human behavior. Within the field of ABA, over 70% of its professionals work with individuals with autism spectrum disorder (ASD). While I believe that it is great that individuals with ASD are able to receive the services they need, I believe that there is more that our science can contribute to the scientific community.

Considering behavior analysis is specifically adapted to treat the contributing factors involved with a particular problem, there is perhaps no other scientific field that has more to contribute on this shift from who caused the overall warming to who is going to respond to the overall warming. In order to begin reversing the effects of climate change, large scale behavior change is required. Considering the field of behavior analysis utilizes and has refined the principles of behavior, I believe that this field would be in a great position to begin working within an interdisciplinary team to solve the overall problem of climate change.

To be a privileged individual is to live a life with a particular advantage, usually one that is not easily quantifiable. In addition, often times individuals living with privilege do not recognize their privilege whereas when the privilege is absent it seems to have an effect on everything you do. Take for example ableism, which is the discrimination against people with disabilities based on the idea that individuals without disabilities are in some way superior. Eco-ableism is the extension of ableism into the environmental movement from activists who fail to take disabled perspectives into account.

While climate change continues to act as a threat to all of us, it will certainly not affect all of us at an equal rate. When I began thinking about how the catastrophic weather events and climate change more broadly will affect individuals across the world, I started to wonder how disabled individuals, who according to the World Health Organization (WHO), make up 15% of the global population, would be impacted by climate change.

So, how does climate change affect disabled people?

Broadly speaking, individuals with disabilities are both socially and economically disadvantaged compared to individuals without disabilities because of a variety of systemic factors. In the event of a climate crisis, disabled individuals are in a much more vulnerable position than able-bodied individuals. For example, decisionmakers may exclude disabled individuals from preparation beforehand which can lead to difficulties if emergency warnings or evacuations are not designed with accessibility in mind. In the event of an evacuation due to a catastrophic weather event such as a hurricane or tsunami, individuals with disabilities may require access to early and specialized transportation to the evacuation site, continued physical, behavioral, and social support, and consistent access to medical care.

Changes in the Earth’s climate is a significant problem which must be managed rapidly because as the Earth continues to warm, these catastrophic weather events are expected to increase in both their frequency and magnitude. This will further necessitate the usage of additional supports for individuals with disabilities.

More research and planning are undoubtedly needed if proper solutions are to be made regarding the climate crisis, and I believe that the field of ABA can be a contributing component of those solutions. Further, it is imperative that any research, planning, or decision making must incorporate disabled populations to ensure these decisions are inclusive and accessible for all.

At the end of the day, climate change is a global problem and will require a global, interdisciplinary, and inclusive solution, and this solution must be found and acted upon soon, if we as a society hope to prevent the climate point of no return.

The Good and the Bad of the “Psychiatry Bible”: Controversy Around The DSM by Social Work Trainee, Madeline Anne Hunter

The Diagnostic and Statistical Manual of Mental Disorders, or DSM, has become the bread and butter for mental health professionals since its first publication in 1952. It is the largest classification system for descriptions and symptoms used to diagnose mental health disorders. This manual has undergone seven renditions, with the most recent release being the DSM-5TR published in March of 2022. As a student only a few months away from graduating with a Masters in Social Work, I am tasked with learning the content of this document inside and out. With this, I have been introduced not only to the evolution of this text, but also the strong opinions that people have about it. I have witnessed multiple heated discussions firsthand, inside and outside of the clinical setting. Over time I have noted a few key arguments that are made repeatedly by professionals.

Before touching on the criticisms, we should first consider the positives that coincide with the widespread usage of the DSM. This document was the first to establish a universal framework for discussing mental disorders in the United States. This has bridged communications by alleviating the need for interdepartmental translation. The standardization of criteria has also brought about positive developments in the evolution of best practice expectations. There is a better understanding of the symptoms associated with particular diagnoses which permits researchers to conduct studies, informing most effective treatments for particular disorders.

Despite several renditions over the years, this document continues to be shrouded in controversy. One of the most prominent setbacks to the standardization of the DSM is that it has led to higher risks of misdiagnosis and over diagnosis of clients. Insurance companies often require the categorization of patients in order to verify the need for treatment, and will often require a diagnosis within the first meeting with a healthcare professional. Additionally, the usage of this manual requires labels to be put on people who exemplify particular symptoms and behaviors. It may be helpful in some situations, for instance this gives mental health clinicians the ability to look back on previous diagnoses and provide better understanding of prior treatment effectiveness. However, these labels never go away, and it can often lead to clients being stigmatized on the basis of a prior diagnosis. Another significant argument is the one-dimensionality of the DSM. This text oversimplifies behaviors in a way that appears to disregard person-in-environment influences. Consequently this can lead to the unconscious shift of thinking of people as people, to thinking of people in regard to their diagnosis.

This document is currently formulated in a way to assist clinicians as they carry out their work. It aims to provide descriptive language regarding the emotional functioning and behaviors engaged in by clients, affecting their day to day lives. It is important to remember the Diagnostic and Statistical Manual of Mental Disorders is a tool, and is not perfect. The DSM-5 TR drawbacks should be considered at all times, and usage should be supplemented with additional diagnostic tools, such as the Psychodynamic Diagnostic Manual. Only through this can clinicians examine a broader spectrum of lived experiences and get a better understanding of the client as a person, and better cater the treatment process to fit their needs.

References

Cherry, K. (2022, May 30). How mental health professionals use the DSM Today. Verywell Mind. Retrieved September 8, 2022, from https://www.verywellmind.com/the-diagnostic-and-statistical-manual-dsm-2795758

DSM history. Psychiatry.org - DSM History. (n.d.). Retrieved September 8, 2022, from https://www.psychiatry.org/psychiatrists/practice/dsm/history-of-the-dsm

DSM. Psychiatry.org - DSM. (n.d.). Retrieved September 8, 2022, from https://psychiatry.org/psychiatrists/practice/dsm

My copies of the DSM-5 (2013) and DSM-5-TR (2022), Credited to Author

No, You’re Not Just “So OCD,” And Here’s Why You Shouldn’t Say So, by Psychology Trainee, Bonnie Shoemaker

As of the year 2022, it’d be hard to believe if you hadn’t heard it, ­– if you hadn’t read about it in a friend’s post on Facebook, if you hadn’t seen it thrown about in the text of a photo on one’s Instagram story. You, yourself, may have even staked claim to it, – a seemingly innocent explanation for why you insist on color-coding your closet, or refuse to leave the house without hand sanitizer. The it that I’m referencing is OCD, or Obsessive Compulsive Disorder, and no, more likely than not, you do not meet the diagnostic criteria for it.

Obsessive Compulsive Disorder (OCD) is a well-known mental illness, but it is one that is easily misunderstood because of the way that it is often portrayed in the media and talked about in everyday speech. However, OCD is so much more than excessive hand-washing or extreme organization. OCD is characterized by involuntary, recurrent, obsessive thoughts and repetitive, compulsive behaviors, and is usually only diagnosed as such when these behaviors interfere with daily life. Most people with OCD have both obsessive and compulsive behaviors, but as with any mental illness, OCD manifests differently in different people. As you can see, OCD is a complex, multifaceted disorder with a range of symptoms that at times, can be quite severe, and even disabling. In fact, a disproportionately high number of those affected with OCD, about 50% of all cases, fall into the severe category, with less than a quarter being classed as mild cases. According to the World Health Organization (WHO), OCD can be so debilitating and disabling to some that in 2019, OCD ranked in the top ten of the most disabling illnesses of any kind, in terms of lost earnings and diminished quality of life. This same report, also, indicated that OCD, at this time, was the fifth leading cause of disease burden for women aged 15 – 44 in the developed world. 1 So, when people misuse the term “OCD,” and make reference to being “So OCD,” they not only fail to acknowledge the legitimacy of OCD as a disorder, they, too, fail to realize the lasting impact it has on those with it.

Still, you might be wondering… what’s the real harm is using OCD synonymously to other terms, such as being clean and organized, or occasionally, even cracking a joke about OCD. After all, it’s just a joke, right?

Unfortunately, for about 2.2 million adults in the United States, alone, OCD is no laughing matter. 2  When one jokes about OCD, or any mental illness/disability, the unintentional consequence of their actions is that real people’s experiences are diminished to nothing more than an idiosyncrasy or quirk, – habits that warrant laughter, rather than treatment. This is not only harmful to those with the disorder or disability, but it can actually hurt their chances of seeking help, should they so need it.

May it be out of fear of being stigmatized, or a misunderstanding of what OCD actually is, studies have shown that it takes an average of 14 to 17 years from the time symptoms of OCD begin for someone to obtain appropriate treatment. This should not be the case, and it cannot continue to be.

To fight against the aforementioned stigma and the widely prevalent misunderstandings about what OCD actually is, it is imperative that we write OCD out of our descriptive language. So, if you find yourself wanting to post on social media about how you just “organized your spice drawer… again,” because you’re “So OCD,” choose to not. If your friend jokes about how “OCD” she can get about certain things, don’t just laugh it off. Consider gently correcting them, offering a more appropriate word for them to use (of note, I use: particular). Then, go a step further. Educate yourself of OCD and other mental illnesses/disabilities, so you know what to look for, and can best correct any future misperceptions that you encounter.

As a Clinical Psychologist, in training, just know: that if you, or someone you love, struggles with OCD, you are seen, you are heard, and your lived experience is valid. Don’t let jokes that you hear, or stigmas that may exist, get in the way of seeking treatment, or of encouraging your loved one to do so.

For more information about OCD, or for treatment resources, I encourage you to visit: https://www.treatmyocd.com/.

References:

1.     https://www.ocduk.org/ocd/world-health-organisation/.

2.     https://www.everydayhealth.com/news/when-its-not-just-ocd/?pos=2&xid=nl_EverydayHealthMentalHealthandMoodDisorders_20171015.

3.     https://iocdf.org/wp-content/uploads/2014/10/What-You-Need-To-Know-About-OCD.pdf.

Living in a Medical Model World by Occupational Therapy Trainee Lizzy Jang

I asked my sister, a 3rd year ophthalmology resident, “Have you heard of the medical model?”

“No, what is it?” she replied. 

It surprised me that something that I had learned in my first few weeks of being an occupational therapy student had not been taught in my sister’s medical school or residency. If she had learned about different models and frameworks, they were not considered important enough to be drilled into her mind and to inform her practice. I was taught that the medical model was widely used in the healthcare system and was useful in managing a range of illnesses and traumatic conditions. But the model often falls short when it comes to understanding disability as something to accept, celebrate and accommodate. This is where models such as the social model of disability may be more fitting, exploring the fit between individual and environment and focusing on changing the surroundings to enable individual participation. My sister’s confusion in response to my question seemed to confirm my fears that the medical model was the golden (if not only) standard in the hospital system. So prevalent was the medical model, that practitioners like my sister did not even realize that they were operating in it. 

The social model of disability is a framework I am still trying to understand. I see snapshots of it come into play when I see kids in clinic for occupational therapy. Kids arrive to our clinic gym with a unique set of challenges, often in receiving input and responding to their environments. Many are hypersensitive to stimuli, while others are hyposensitive, and others are a mixture of both depending on the stimulus. For example, a kid who struggles to integrate sensory information may struggle to understand where their body is in space, making it really hard to coordinate their legs to jump rope. In another case, a hyposensitive child, under-reactive to their environment, may need extra sensory stimulation to stay focused on an activity, which may manifest as seeking swinging and spinning activities or stomping their feet. 

The closer I looked and started to understand how each individual mind and body worked, I was able to identify specific activities that were calming, exciting, focusing. Adaptive. Each child had a different sensory fingerprint, a unique code of activities and sensations that engaged them. The more we understood the set of input that matched their sensory fingerprint, the closer we got to the right fit between the environment and individual to support participation and engagement. 

One afternoon I was working with a 6 year-old child who had been coming to clinic for several months to practice communication and motor coordination. We would start every session with a sensory warm-up activity, usually swinging and spinning on a platform swing. This afternoon when he arrived at clinic, he ran towards the swing, lay flat on his back and said, “Spin me, please.” First I smiled, then it dawned on me that we had cracked the code, a sensory fingerprint that was unique to him. Here was an activity that we had collaboratively identified as one that grounded him before engaging in more purposeful play and communication. The environment was supporting him.

As occupational therapists, we learn to navigate various frameworks to understand clients and their goals. We target performance and competence, assisting our clients to do the things that they want to do, whether it’s dribbling a ball so they can play with peers, or to develop handwriting skills so they can progress to the next grade in school. We learn to use the medical model to understand various injuries, diagnoses, and impairments. However we are also learning the countless ways to target participation, which can look different than the performance or competence that we anticipated. Participation can look like improved handwriting, but it might also look like a modified classroom with modified tasks that the student can readily engage in. It might also look like a child spinning on a platform swing. As I learn to navigate the hospital system and realm of the medical model as an occupational therapist, I expect to come across practitioners, to whom the medical model has been the only provided framework, who may question my clinical judgment and approaches to therapy. When this happens, I hope to keep the medical model in one hand and the social model in the other, critically applying what best serves my clients to engage in their environments in a meaningful way.

The “Dangers” of the Collegiate Experience & Productivity Culture by Social Work Trainee, Mary Griffith

Since arriving at the University of Illinois I have experienced the toll that stress can take on students’ mental health.  From the beginning, students are pulled in many directions from excelling academically to building social connections.  The stress associated with looming deadlines and uncertainty about the future have large implications.  According to the New York Times, over 60% of students reported “overwhelming” anxiety in the last year and 40% reported depression that interferes with functioning. Another article published in Nature reported that graduate students around the world have rates of anxiety and depression six times higher than the general population.  Moreover, according to the Chronicle of Higher Education, universities are struggling to keep up with the increased need for mental health services. 

As a graduate student with anxiety and depressive symptoms, I am encouraging professors to recognize that students are more than their grades and that academic performance doesn’t necessarily indicate future success.  It is critical that professors recognize that mental health matters and should take priority over academic deadlines.  Professors can normalize some of the stress associated with graduate work by periodically reminding students it is okay to feel anxious or depressed about high workloads or a poor test score.  Finally, and perhaps most important, professors should know how to help students properly access mental health resources on campus and in the community.  By following these suggestions, professors can make graduate education a positive learning experience despite the inherent stress. 

Furthermore, as someone with a disability, anxiety, and depression, I recognize that productivity culture in both education and the workplace is incredibly toxic.  What is toxic productivity you ask?  According to HuffPost, “toxic productivity is essentially an unhealthy desire to be productive at all times, at all costs. It’s the need to go the “extra mile” at work or at home, even when it’s not expected of you”. My dad has been repeating the following phrases for years:

1.     “Perfect is the enemy of good”

2.     “Create, then recreate”

I believe they are prefect examples of the dangers of toxic productivity and how to combat its negative effects.  The idea of completing copious of work without regard to mental health and disability factors is ableist and exacerbates a wide variety of disabling conditions. In social work, we talk self-care to absolute death.  However, I’m realizing now more than ever that the deliberate act of self-care (whatever that means for you) is truly critical to any type of success.

The Chronicle of Higher Education: https://www.chronicle.com/

Learn more about toxic productivity: https://www.huffpost.com/entry/toxic-productivity-work_l_606655e7c5b6aa24bc60a566

Please Hear Our Voice by Kelly Calloway, Family Advocate Trainee

The above image is of 3 children standing in the wake of waves, 2 of them holding their shorts up, as 1 looks straight out at the ocean, one looks down at the waves, and the other looks to the right.

I come at this from the perspective of a parent, but also as a professional in the field of disability, I can see how easy it can be to make assumptions on a parent’s decision or comment about their child. As a parent and as a professional, I call on you to respect a parent’s expertise as it relates to their own child. I think it is important to always step back and try to understand why a parent may be feeling the way they are. Consider coming in with a positive attitude and one that emphasizes the importance of a parent's concerns and questions. A parent is there for every moment, the good moments, but also the hard, the long nights, the broken hearts, the pain, the tears, the missed opportunities. They are there when their child does not understand why something they love is being taken away because there wasn’t an accommodation that could be made that didn’t violate their human rights. Let’s not be so quick to advocate for their human rights if the right itself may take away something a person loves.

It is not easy to understand how a disability can affect the daily life of any one person or their family. We are all very diverse. We can understand what accommodations can be given to support a person or family, but we all experience life at our own 100% and it looks different for everyone. As I mentioned I’m a professional in the field, a family support specialist for the Air Force, but I "live" the perspective of that as a mother of children with disabilities. I’m speaking on behalf of all parents of children with neuro-developmental disabilities. The perspective that keeps me up at night. The perspective that makes me question whether I’m getting it right. I want the world for my children and I know their disabilities make life hard right now. I want to provide experiences that teach them to advocate for the things they need and to see that there are no limits to what they can achieve. The ocean has always been a place for me to be reminded about endless possibilities in a world that is excitingly chaotic yet stabile and peaceful. Recently I had a chance to take my kids to see the ocean for the first time since they were little. I love that they found the same fascination for all the ocean can symbolize about life.

“The ocean is the beginning of life on Earth, and symbolizes formlessness, the unfathomable, and chaos. The ocean can also be seen as a symbol of stability, as it can exist largely unchanged for centuries. The ocean is considered to be boundless, a place where one can easily be lost, and can

therefore be seen to represent the boundless span of life, and the way one can get lost on the journey through life.”

There isn't a day that I don't think of my daughter's future. She was diagnosed with Fetal Alcohol Spectrum Disorder (FASD). The challenges she faces everyday are directly related to the decisions someone made. It wasn't a tragic car accident or some other unforeseen tragedy. It was a decision to consume drugs and alcohol during pregnancy. She's a beautiful girl, inside and out. She has so much to offer. In our case, her biological mother was also faced with situations that were a result of parents that were making poor decisions. She too was in foster care.

Trust me, as a parent of children with disabilities regardless of their age, when they find natural opportunities to be a part of something that interests them, the last thing we want to do is be in the way. If it's unsafe, then it's my responsibility to intervene and help find ways to make it safe. How we choose to intervene as parents is very important. If we make an irrevocable decision too soon, we could have regrets. What parent doesn't make decisions that might have been driven by emotion, fear, or exhaustion? A parent recently reminded me of a saying, “You’re only as happy as your saddest child.”

As parents, we know our child's potential long before a medical provider makes a diagnosis. Most parents long to fully understand it. This is where we need expertise. We long to understand their diagnosis so that we can help our children make their own decisions. Parents need someone to take the time to help them fully comprehend how we keep our children safe and ensure the safety of those around them while giving them the full entitlement to their human rights. We want to understand even if we are not asking for it.

As parents of children with neuro-developmental disabilities, we want what all parents want. We want our children to live their best life. We know our children well and need the "professionals" on our team to respect our expertise. Sometimes, we all need to be reminded or informed of research and resources to help make informed decisions that support our children while affording them of the rights they are very much entitled. We need to be careful. We need to avoid jumping to conclusions that parents are ableists. Let's not be so quick to make that accusation because that too is ableism. Ableism can also be, medical experts or professionals jumping to conclusions about a parent’s intentions based on limited information. Sometimes parents don’t come forward because of a fear of asking for help, asking for help and never getting it, or they may feel like they don’t need help.

This makes me think of a family that spends a lot of time at water parks. She carries her 12-year-old daughter up 5 flights of stairs so that she can join the entire family. She looks at me with tears in her eyes and says, “I hate that this might be her last time ever going down a slide. I can’t carry her safely to the top if she gets much bigger.” You see, a parent’s desire for a child to stay small isn’t always about what makes things easier for them. It’s what opportunities will be taken from their child when they can no longer be safely carried up 5 flights of stairs to go down a water slide with their family.”

When I sit with my fellow parents, we all have different stories, but do you know one common experience most of us have? Most of us will tell you we had to fight to be heard and understood. We advocate because we love. We love deeper than most professionals will ever understand. Our requests come from desperation to protect our children from harm and embrace the opportunities for them to live their best life. Their long term happiness is at the forefront of what we hope for their future.

I use those experiences to advocate for the importance of hearing and acting on the voices of parents and individuals with disabilities. We need to teach self and family advocacy as early as possible so that they know how to ask for the right support, treatment, or accommodations.

Let's embrace diversity by getting to know one another and educating one another to avoid ableism and respect the rights of all individuals, especially as it relates to parental identity. Whether professionals want to admit it or not, parents are the experts on their child and we all should respect them for that. Listen, respect, and educate parents, when needed, in their role of expert on their child.

Last, thank you to those of you that do listen, encourage, and respect parents. Thank you for taking the time to educate about research, resources, and support. I don’t mean to imply you don't. We see you; we thank you and appreciate far more than you know. Unfortunately, when we must speak up, we can't always point those out and still feel as if we are heard.

Reference http://websites.umich.edu/~umfandsf/symbolismproject/symbolism.html/O/ocean.html

Better Late than Never, How to be an ALLY by Special Ed Trainee, Evelyn Boateng

As LEND comes to a close this 2021 - 2022 year, I reflect on everything I have learned about the disability movement and the fight for equitable access to society. I have learned so much that will positively impact my practice in the future. As I think about the next steps after LEND, I would like to emphasize the importance of taking the knowledge gained as a LEND trainee to become an ALLY for the disability community. The CDC states that an ALLY  “acknowledges and respects individual experiences and abilities, learns about different disability types, leverages their influence to promote accessibility and inclusion, and yields the floor to people with disabilities to help identify and eliminate barriers.”

pictured is a circle outlined in bold orange with black text inside stating “I’m a DISABILITY A.L.L.Y”

There are a few things you can do to demonstrate allyship including educating yourself. We learned about many different disabilities but there are so much more we do not know about. Take the time to educate yourself about the various disabilities, disability models, disability movement, and ableism. When creating content make sure they are accessible from the beginning. You should consider accessibility in all that you do. Amplify the voices of disabled people over your own. Always assume that a disabled person is more than competent to speak and act for themselves. Lastly, speak up and speak out when you notice ableism occurring in your work, school, home, and social environment.

As you leave the LEND trainee program and move on to your next stage in life, I implore you to think about this definition of ALLY and make a conscious, concerted and constituent effort to be an ALLY for the disability community in all that you do.

Resources

●      Become a Disability ALLY in Your Community and Improve Inclusion for All | CDC

●      Be An Ally | Accessibility Information

●      Disability Allyship Resources

Disability Policy Seminar by Nutrition Trainee Annemarie Mysonhimer

I am very grateful to have had the opportunity to attend the Disability Policy Seminar (DPS) at the end of March 2022. Due to restraints in traveling due to my dissertation project, I was so glad that this conference was a hybrid event – there was both a virtual platform and an in-person event in D.C. Additionally, I know that having the option of attending virtually made the event accessible to many people with different disabilities who may not have been able to attend otherwise. I hope this option is maintained for the future. Not only did the seminar provide educational content, but it also had a great networking tool for virtual attendees like myself. It helped me to feel like I was really there, interacting with people who care about the same things that I do.

The United States Capitol. Image from the Disability Policy Seminar virtual attendee portal

First, I learned a good deal about Social Security and Supplemental Security Income (SSI) benefits. Being new to the policy arena, I appreciated the educational content provided by the speakers. SSI serves seniors and those with disabilities, particularly those with low income. Many people depend on SSI benefits throughout their day-to-day lives. However, I learned a few surprising things about this system. For one, it has not been updated in years to reflect inflation, which is very high today. This subjects people who depend on this policy to live in poverty. Moreover, if people receiving SSI benefits make too much income from a job, these benefits will be taken away. Disabled people are being told they should work if they are able, but when they do, they are forced to reduce their hours to stay below the required income threshold – this means living day-to-day at a poverty level and not being able to accrue any savings to improve their livelihoods. This system is very unfair and needs to be updated. While there are many other problems with SSI, I will highlight one more that really struck me. If two people receiving SSI benefits get married, you would logically think that they as a couple would receive twice the benefits, right? Wrong! Instead, the benefits received for each person are actually reduced. This means that people with disabilities are being penalized for getting married. I could not believe it when I heard this. This policy needs to change.

Additionally, I learned that we are sorely in need of more funding for home and community-based services (HCBS) and direct support professionals (DSPs). While problems already existed in these areas before COVID-19, the pandemic highlighted these flaws and brought them to the forefront. HCBS, paid through Medicaid, allows people with disabilities to receive the help and services they need in their own homes or where they live in the community. These services may include personal care and help with activities of daily living. HCBS makes a big difference in the lives of many people with disabilities and their families. Without these services, these people may not be able to remain in their homes. Therefore, we need to ensure that funding is continued and increased for HCBS.

Furthermore, the people who put these services into action are DSPs. While their role is vital in helping people with disabilities live where they desire and have a good quality of life, their salaries do not reflect the importance of what they do. Also, due to the low wages, there is a high turnover rate for DSPs, making it difficult for people who need their services to have continuous resources. Without the dedication of DSPs, HCBS would not be possible. Just as no adjustment from inflation was given for SSI benefits, DSP wages have also not been increased with this high inflation rate. The funding for both HCBS and DSPs needs to be updated.

Networking Tool for Virtual Attendees. Image from the Disability Policy Seminar virtual attendee portal

Lastly, in addition to the education content I received from attending DPS, I also appreciated the networking platform for virtual attendees. Half-hour blocks were scheduled during the event where attendees could have face-to-face 5-minute conversations with other attendees. Of all the people logged into the networking platform, participants were randomly paired up to talk with one another. There was also an option to extend to 10 minutes if the conversation was really flowing and both attendees agreed that they needed more time. Through this platform, I was able to meet many wonderful people. I even connected with two self-advocates after the seminar, and we scheduled hour-long sessions to talk further. I learned so much from them and we have agreed to stay in touch.

During these networking sessions, I had one particularly memorable experience that I would like to share. In one of the video calls, I was matched with a gentleman who could not speak. I spoke to him for the 5 minutes, trying to ask him yes or no questions that he could respond to. He seemed to nod and smile several times throughout our call. After the networking sessions were over, I messaged him through an attendee contact tool on the DPS platform. From his response, it was clear that he had understood everything I had said. I am so glad that I was matched up with him. He was so brave to hop on the networking calls despite what others might think. I would not have had the courage to do that. Every day, people like this man are written off, or only their caretakers are spoken to. I think the world would be a better place if everyone had the chance to meet and get to know a person like him.

Thank you LEND and DPS for making this experience possible for me and organizing such an important event!

Trillions of Tiny Companions by Annemarie Mysonhimer, Nutrition Trainee

Autistic children often experience gastrointestinal discomfort, ranging from constipation to diarrhea. Indeed, it is challenging to study these symptoms using measurements like averages because digestive symptoms can be very individual. For instance, one review of 144 research studies of autistic people found that 4-46% experienced constipation, 2-76% experienced diarrhea, and 4-97% experienced ≥ 1 gastrointestinal symptom (1). Wow, what a range!

A big reason for the individual experience of digestion is our gut microbiota. These are all the bacteria that live inside our intestines, mainly in the large intestine. In fact, you have about as many bacterial cells on and inside your body as you do human cells. Trillions! Even more surprising, you have about 100 times more genes from these bacteria than your own human genes! Because your genes are so important in making you who you are, think what a huge role these bacteria can play in your health and life. Just like you have your own unique fingerprint, you also have your own unique assortment of bacteria that live inside your gut.

After learning a bit about your microbiota, you’re probably beginning to see why each person can have such different gastrointestinal symptoms, even after eating the same foods. Interestingly, autistic people seem to have a different milieu of microbiota in their intestines than those who are not autistic. In a study of many studies and a summary of all their data (called a systematic review and meta-analysis), researchers found that autistic children had higher amounts of some types of bacteria and lower amounts of other bacteria than non-autistic children (2). Notably, one of the reduced bacteria found across these studies was Bifidobacterium. This is one of the most common bacteria found in probiotic supplements at grocery stores or purchased online. It’s easy to understand why there is so much hype around probiotics (bacteria that have health benefits for humans) and prebiotics (fibers that probiotic bacteria eat) to support autistic people, especially their gut health.

While I think there is a lot of potential moving in this direction, we also need to be cautious. There are so many probiotic supplements out there, and because we all have such a unique set of microbial companions, we need to treat them as the truly unique friends that they are. Just because I love to eat garbanzo beans, this doesn’t mean that you love to eat them. And just because my microbiota thrive on certain types of fiber, this does not mean that yours thrive on the same type. There is no one-size-fits-all probiotic that’s going to fix everything. Ultimately, we need to move toward personalized nutrition and care to support autistic individuals and their families.

References:

1. Holingue C, et al. Gastrointestinal symptoms in autism spectrum disorder: A review of the literature on ascertainment and prevalence. Autism Res. 2018;11(1):24-36.

2. Iglesias-Vázquez L, et al. Composition of gut microbiota in children with autism spectrum disorder: A systematic review and meta-analysis. Nutrients. 2020;12(3):792.

The Benefits of Parent Training by Michelle High, Nursing Trainee

The image above is of an adult finger being held in a baby’s hand.

After graduating from college, I had the privilege of serving at Casa de Esperanza in Houston, Texas providing residential care to children in crisis. Despite some serious heartbreak that comes with good-byes and uncertainty, my two-year journey as an intern/foster parent was filled with such incredible joy and love. There is not a day that goes by when I don’t think about my kids and what I learned during that time…and it was a lot. I learned how to install car seats, navigate the pick-up/drop-off line at school, build a repertoire of bedtime songs, coordinate special deliveries from the Tooth Fairy, Santa, and the Easter Bunny, dance to the silliest of songs to get a smile, and kiss ouchies away. I also learned that having access to high quality resources and support, like therapy and evidence-based parenting programs, made a difference in our lives.

When I was feeling overwhelmed, challenged, and tired from handling tantrums, disruptive behavior, and a school system that didn’t have the resources to help meet a child’s needs, we started Parent-Child Interaction Therapy (http://www.pcit.org/what-is-pcit.html). This evidence-based parenting program helped me add the tools I needed at the time to my parenting toolbox. I think our parent-child relationship was strengthened and PCIT helped me learn how to provide structure and consistency in challenging parenting situations.

As a pediatric nurse, I am passionate about improving health outcomes for children and families. My positive and impactful experience on the receiving end of PCIT ultimately led me to my research interests around parenting and parent training. Parent training is one opportunity to provide education about child development and care, positive parent-child interactions, responsiveness, communication, behavior management, and teaching (Centers for Disease Control and Prevention, 2009). As I continue my training in LEND and my PhD program in Nursing Science, I am looking forward to researching and learning more about the education needs identified by parents of children with medical complexity and how practitioners can help build on family strengths with evidence-based parent training programs.

Reference:

Centers for Disease Control and Prevention. Parent Training Programs: Insight for Practitioners. Atlanta (GA): Centers for Disease Control; 2009. Retrieved from: https://www.cdc.gov/violenceprevention/pdf/parent_training_brief-a.pdfs

The Intersections between Race and Disability by Odile Carrol, Disability Studies Trainee

After the murder of George Floyd in May 2020, the United States observed an immediate rise in Black Lives Matter protests, anti-police state rhetoric and collective antiracist efforts. However, while several DPOs (Disabled Person’s Organization), disability advocacy, and other disability-related organizations publicly put forth clear language admonishing actions of police officers that led to the death of Floyd and many other people of color in the United States, there has been a dearth of accessible anti-racist resources developed for the intellectually and developmentally disabled community. This gap in intersectional activism is not new or unique, but highlights the acute need to explore how activism can continuously be made more accessible to all members of the disability community. The article linked below indicates important conversations being had in spaces of higher education around the intersection of BIPOC communities and Deaf and disabled communities, but is limited in its context and audience and indicates the urgent need to proliferate multiple, accessible anti-racist resources for this activism work to truly occur intersectionally.

Disability Justice, Race and Education - article mentioned above