Stimming by Allison Blevins

Have you ever seen somebody jump up and down, flap their hands, or rock back and forth? These are a few of the many self- stimulatory behaviors that people with sensory processing disorder (SPD) and autism spectrum disorder (ASD) participate in.

What is sensory processing disorder?

SPD is a diagnosis recognized by the field of occupational therapy, but it is a controversial term in other disciplines. However, there is agreement between fields that many people with ASD have sensory dysregulation, or experiences of hypersensitivity (too much sensory input) or hyposensitivity (not enough sensory input). A healthy way to process these different sensory experiences is to participate in stimming. Stimming is a way for people with SPD to self-regulate their bodies and their sensory systems.  

Naoki Higashida, a 13-year-old boy with ASD, describes the reason he jumps: “I can feel my body parts really well… and that makes me feel so, so good… it’s as if I’m shaking loose the ropes that are tying up my body.” (Higashida 47-48)

Some think that stimming can isolate people with ASD and hinder their inclusion in their community, so they try to unteach these behaviors or teach people to only self-stim in private. These actions can make people feel ashamed and secluded.

Everybody stims to some degree; for example, shaking your leg in class, clicking a pen, pacing, etc. Many neurotypical people are socially aware of these actions and either do them in private or do them in a way that the people around them do not notice, however, these are important actions that keep us calm and focused. We should not take these safe, self-soothing behaviors away from people with SPD.

What can we do?

1.      Allow your child, student, or friend to do what they need to do to feel regulated in a safe and judgement free zone.

2.      Learn more about SPD from the perspective of someone with autism by checking out this video https://www.youtube.com/watch?v=upU-dc19Taw or reading more from The reason I jump by Naoki Higashida.

My Internship Experience with Grupo Salto by Janeth Aleman Tovar

This past year I had the opportunity be an intern for Grupo Salto. Grupo Salto  is a support group for Latino families of children with Autism and other disabilities. At the monthly meetings, held every third Saturday of the month, Grupo Salto provides educational trainings for families of children with disabilities.

During my internship, I had the pleasure of working with Grupo Salto’s Tu y Yo group. The Tu y Yo group is a group of adults with autism, whose mission is to educate the public about autism. I also coordinated and facilitated a parent training session about transition planning for young adults with disabilities. Finally, I had the honor of getting to know Grupo Salto’s phenomenal staff and volunteers. Here are some of the most memorable moments of my internship.

Memorable Moments 

Getting to know Tu y Yo members. I learned about their interests and plans for the future. For example, one of the members was working on her bachelor’s degree in psychology and another young adult was seeking full-time employment with one of the major U.S. airlines. He shared his traveling experience and gave me some great traveling tips!

Helping out during Grupo Salto’s Annual Banquet. I helped with the silent auction and raffle, but my favorite was the dancing! At the banquet I also got to see many of the items sold by the Tu y Yo members. Such items included, coffee mugs, t-shirts, and aprons. All items were personally inscribed by Tu y Yo members.

Getting to know parents during the monthly meetings was an unforgettable experience. Hearing about their experiences with the special education process has influenced my research interests. Unfortunately, parents shared very negative experiences with the special education process, specifically the transition planning process. Hence, my research interests in supporting family involvement with transition planning.

Working with Grupo Salto’s staff. Specifically, witnessing their ongoing passion to support Latino families of children with disabilities. The staff and volunteers have motivated me to continue supporting Grupo Salto and other non-profit organizations that support families of children with disabilities.

Gift wrapping presents with Tu y Yo members. I enjoyed hearing about their plans for winter break. Some of them had plans to work during break, while others planned to relax by playing video games, reading or watching their favorite shows. Others had plans to visit family members out of town.  

I’m very grateful for this opportunity and highly recommend volunteering for Grupo Salto or any non-profit organization serving families of children with disabilities.

Intersections of Hope by Taylor Nicoletti

Last month I had the opportunity to attend one of the first Chicagoland Disabled People of Color Coalition (DPOCC) town hall meetings. This coalition was founded in 2018 by self-advocates Timotheus “T.J. Gordon, Jr. and Jae Jin Pak. Gordon and Pak created the coalition in hopes of unifying disabled, autistic, Deaf, and neurodivergent people of color and encouraging them to have pride in being disabled people of color and develop their advocacy skills. The coalition’s mission statement includes:

“We, the Chicagoland Disabled People of Color Coalition (Chicagoland DPOCC), are a group founded by, centered around, and run by disabled, Deaf, autistic, and neurodivergent people of color in the Chicagoland area.” The organization promotes disability justice, education around disability acceptance and accessibility, and fosters a safe space for disabled people of color to advocate and discover their disability pride. Allies, like myself, are welcome to participate and engage in DPOCC, as long as they uphold the three-point mission statement and understand that the organization centers around issues and topics related to disabled people of color.

During this meeting, DPOCC founders, including T.J. and Jae Jin, and 2 other disabled people of color, and 2 allies, including myself, spent time discussing the barriers disabled people of color face. Much of the conversation was on the premise that the intersectionality of race, ethnicity, and disability are essential to understanding and addressing these barriers. Additionally, self-advocates emphasized the importance of context and environment. For example, Lawndale, which is a predominately African American and Latinx community in Chicago, where 93% of its families live below the poverty line, is a highly under resourced and marginalized community that embodies even greater challenges for disabled individuals. People of color with disabilities experience the compound effect of race and ethnicity and disability with an increased poverty rate, plus the many additional barriers to climbing out of poverty. Limited job opportunities systemically related to race and disability create even greater challenges for disabled people in Lawndale.

The HHS Advisory Committee on Minority Health has described living as a member of racial or ethnic minority group with a disability as a “double burden” due to the added sociopolitical challenges encountered. Much of my clinical work throughout the past four years of training has been focused on serving children, adolescents and families within Lawndale who have this “double burden”. As an ally, I walk away from my clinical interactions, and from meetings like the one at DPOCC, feeling challenged to use my work, skills, and privilege to also “promote disability justice, education around disability acceptance, and foster a safe space for disabled people of color,” as stated by DPOCC’s mission statement. One way I think this is possible is by applying Bryan Stevenson’s four rules for achieving peace and justice:

1.      Stay close to the people you are trying to help. It can be easy for us to stay in our academic meetings, didactics, and classrooms, but I believe to truly be an ally is to be engaging with and in the communities we are allies for. How can we advocate for issues we are too far away to even see?

2.      Change the narrative. While this is thankfully changing, much of society has a negative narrative about both people of color and people with disabilities. To be an ally and to impact change, we must point to a different narrative, a truer narrative of disabled people of color.

3.      Stay hopeful. This is likely my favorite rule. Bryan Stevenson often states, “injustice prevails where hopelessness persists.” As allies, we must be people of hope toward change to effectively bring justice. First, we must find what is it that gives us hope. While I appreciate the HHS Advisory Committee on Minority Health’s description of the intersectionality of being a member of a racial minority group with a disability as a “double burden,” I want to argue that allies can work at this intersection and offer hope, through our work, which should ultimately “promote disability justice, education around disability acceptance, and foster a safe space for disabled people of color,

4.      Do things that are uncomfortable and inconvenient. To be an ally, we must get uncomfortable, be willing to increase self-awareness and engage in self-criticism to continue to grow. If we continue to sit in spaces where everyone agrees with us and has the same exact views, how will we grow? As an ally, attend a DPOCC event, and listen to the voices of disabled people of color and find ways that your work can contribute towards their mission!

Image description: The image is the Chicagoland Disabled People of Color Coalition logo with four distinct areas. The upper left corner is the Chicago flag, which consists of two blue horizontal stripes or bars on a field of white, each stripe one-sixth the height of the full flag, and placed slightly less than one-sixth of the way from the top and bottom. Between the two blue stripes are four red, six-pointed stars arranged in a horizontal row. The upper right corner includes 8 different symbols that signify accessibility, such as the CC for closed captioning. The lower left corner is an image of a disabled individual of color wheelchair user in the street with other individuals who are walking beside them. The lower right corner is the UIC symbol which is a closed circle with the letters, “UIC” bolded on the inside of the circle and above the circle are the words “Disability and Human Development” bolded in black and the words, “College of Applied Sciences” bolded in gray.

taken from: https://chicagolanddpocc.wordpress.com

Let’s talk about sexuality! Sexual Health Education for Youth with Disabilities Jasmine Brown, Disability Studies Trainee

(Picture: Word Cloud with the words sexual health large in the middle. Other words include protection, disease, sex, medicine, healthcare, etc.)

        Sexual health education is often neglected when it comes to youth with disabilities. Factors that hinder youth with disabilities access to sexual education can be sexual education curricula not tailored to meet the needs of this population and families having anxiety about their child being exposed to sex and wanting to protect them from it. However, we know that children with disabilities are 2.9 times more likely to be sexually abused and 4.6 times more likely if they have an intellectual or mental health disability when compared to children without disabilities (Smith & Harrell, 2013). However, with appropriate training and education, parents can play an integral role in informal sexuality education for their youth with a disability in a cost-effective way (Clatos & Asare, 2016). By not talking about sexual health with youth with disabilities, we are doing them a disservice and setting them up for lack of control and autonomy over their bodies. Youth with disabilities are sexual beings, just like typically developing youth and deserve the right to have accurate information and control when it comes to their sexuality. 

        According to the Advocates for Youth (Szydlowski, 2016), here are a few guidelines that parents can use when talking about sexuality and sexual health with youth who have a disability:

1. Begin talking about sexuality when your child is young. You don’t want to wait until the child reaches puberty to start having these conversations.

2. Educate yourself first and know what resources are appropriate for your child’s individual needs. Since these conversations can be challenging to have in the first place, it is essential to understand what information is the most important and how to appropriately share it with your child at a level that is right for their needs. There are curricula and other resources out there that have been developed to assist with sexual health education at different developmental levels. 

3. Ensure to use appropriate language for body parts and functions when having these conversations. When children have accurate information on these things, they are often more likely to report abuse.

4. Use everyday moments as a way to teach and begin these conversations. These can be perfect opportunities to ease into the conversation about sexuality and health. (Examples: A friends marriage coming up or a family member new pregnancy)

5. Be patient with your child and know you will have to repeat the information multiple times. Topics discussed around sexual health can be complicated and abstract at times, so it is essential to recognize that the youth may not completely understand it the first time around. It may take multiple conversations for it to sink in. 

Below are a few resources that can be useful in learning more about sexual health and sexuality for parents and youth with disabilities:

• The Birds and the Bees 

• AUCD – Sex Talk for Self-Advocates

• Sexuality Education for Youth with Disabilities: A Resource List 

• RespectAbility 

• UIC – Sexuality and Disability Consortium 

References

Clatos, K., & Asare, M. (2016). Sexuality Education Intervention for Parents of Children with Disabilities: A Pilot Training Program. American journal of health studies, 31(3), 151–162.

Smith, N. & Harrell, S. (2013). Sexual Abuse of Children with disabilities: A National Snapshot. Vera Institute of Justice: A Issue Brief, 1- 12

Sydlowski, M. (2016). Sexual Health Education for Young People with Disabilities: Research and Resources for Parents. Guardians. Retrieved from https://advocatesforyouth.org/wp-content/uploads/storage//advfy/documents/Factsheets/sexual-health-education-for-young-people-with-disabilities-parentsguardians.pdf

Understanding the Spectrum of Sensory Differences by Emilee Valler Gorfien

On a recent trip, I noticed the below billboard from Autism Speaks presented in the airport and on several billboards on the interstate into Chicagoland. The poster draws awareness to the general public about the sensory differences that many individuals with Autism Spectrum Disorder experience. In 2013, the criteria for Autism was expanded to include sensory sensitivities as a criterion for diagnosis under the Restricted and Repetitive Activities section. As such, it is becoming more standard for medical providers and families coming in for diagnostic evaluations to note sensory sensitivities in the interview process or when identifying red flags for their child. Importantly though, there is great heterogeneity in the presence of sensory sensitivities within the Autism population (and within the wider human spectrum) and it is not necessary for sensory differences to be present in order to have a diagnosis of Autism. Similarly, sensory sensitivities are also present in other developmental and behavioral disorders and are not only present in the Autism phenotype.

(Autism Speaks, 2019)

(Picture: Autism Speaks billboard of a cartoon young boy who is kneeled down, with his eyes shut, and hands over his eyes surrounded by dark lighting and a number of indistinguishable objects. In white letters it reads “Sensory Sensitivity is a sign of Autism”)

Broadly, sensory processing refers to how our bodily systems manage sensory input from our environment. Most people are aware of hyper- or hypo-sensitive differences in the five senses (touch, taste, smell, sound, and visual); however, sensory sensitivities may also be in relation to temperature, pain level, proprioceptive (i.e., body awareness), and vestibular (i.e., balance, movement) input. When we refer to sensory differences in ASD,  clinicians are often looking at dysfunction in sensory modulation. Sensory modulation refers to one’s ability “regulate and organize the degree, intensity, and nature of responses to sensory input in a graded and adaptive manner, so that an optimal range of performance and adaptation to challenges can be maintained” (Lane, Miller, & Hanft, 2000). Dysfunction in sensory regulation occurs when an individual is either sensory-seeking or sensory avoiding, and are posited to be broken down into the following categories:

•Over-Responsiveness:

•Distracted

•High-Arousal

•Impulsive and responds too much

•Aggressive

•Hard time disengaging from source of input

•Sensory Avoidant:

•Hypervigilant to environment

•Scanning for threats

•Fearful

•Anxious

•Sensory Under-Responsive:

•Reduced arousal

•Lack of awareness for stimuli

•Inattentive or delayed response to stimuli

•Sensory Seeking:

•Heightened arousal and over excitable with stimuli

•Driven to seek stimuli

•Impulsive

•Stimulation may cause disorganization and not satisfy child’s sensory needs

Outside of Autism Spectrum Disorder, children who have ADHD were also demonstrated to have more sensory processing difficulties and increased reactivity to sensory input than children without developmental disorders (Mangeot, Miller, McIntosh, McGrath-Clarke, Simon, Hagerman, & Goldson, 2001; Yochman, Parush, & Ornoy, 2004). Differences in sensory processing and integration have also been related to anxiety disorders, other developmental disorders, and behavioral disorders.

There is a currently controversy over sensory processing and whether symptoms are sufficient to be considered a distinct disorder (i.e., Sensory Processing Disorder). A summary of current state of positions held by both psychiatrics/pediatricians and other allied professions can be found here: https://childmind.org/article/the-debate-over-sensory-processing/. Despite the camp of professionals that support Sensory Processing Disorder as a unique condition, the American Academy of Pediatrics recommends that an independent diagnosis of Sensory Processing Disorder not be given, as it has not been empirically-supported that this is a separate “disorder” and not recognized by any diagnostic manuals. Rather sensory differences are more likely to be a component of an underlying behavioral or developmental disorder, such as ASD and ADHD. Find their full position statements here: https://pediatrics.aappublications.org/content/129/6/1186

Regardless of the etiology of sensory differences or affiliated developmental disorders, the experience of sensory dysregulation can be impairing to a child’s day-to-day functioning and lead to more disruptive/negative behaviors. The following are three videos, which can simulate and better understand the experience of individuals with sensitivity to environmental stimuli:

https://www.youtube.com/watch?v=5Zo8lzPlUbg

https://youtu.be/ycCN3qTYVyo

https://www.autismspeaks.org/sensory-issues References:

Lane SJ, Miller LJ, Hanft BE. (2000) Toward a consensus in terminology in sensory integration theory and practice. II: Sensory integration patterns of function and dysfunction. Sensory Integration Special Interest Section Quarterly, 23, 1–3.

Mangeot, S. D., Miller, L. J., McIntosh, D. N., McGrath-Clarke, J., Simon, J., Hgerman, R., J., & Goldson, E. (2001). Developmental Medicine & Child Neurology, 43. 399-406.

Yochman, A., Parush, S., & Ornoy, A. (2004). Responses of preschool children with and without ADHD to sensory events in daily life. American Journal of Occupational Therapy, 58, 294–302.

The world of disabilities and mental health in Pediatrics by Gabriela Balsa

When I chose pediatrics as my medical specialty, I had not realized how fascinating the area of behavioral and developmental pediatrics was. I found fascinating the degree of improvement that patients with behavioral and developmental problems can achieve when they have access to the resources available and the support they need. This is not a pediatrics sub-specialty in Venezuela, even though this area is basically the foundation of Pediatrics. I was surprised to find out that, here in the U.S it has become so important that it is now an entire area of sub-specialty by itself.

Even though this area is so important in the field of Pediatrics, there is a lack of resident training and education in developmental, behavioral and mental health disorders. For decades, the need for improved pediatric residency training in behavioral and mental health has been recognized and even though the process has improved, there is little evidence that residency training prepares pediatricians to care for children with developmental, behavioral and mental health disorders, the most common group of problems likely to affect their general pediatric patients. 

The prevalence of behavioral and mental health conditions in children, adolescents, and young adults has increased in the past few decades, yet medical students and pediatric residents do not recognize the importance of this area in Pediatrics.  A study published in Pediatrics in 2017 found that in the U.S, around 65% of pediatricians surveyed by the American Academy of Pediatrics indicated that they lacked training in recognizing and treating behavioral and mental health problems (2). This is especially alarming considering that we also face a shortage in Developmental and Behavioral Pediatricians. Unfortunately, practicing in developmental-behavioral pediatrics is characterized by inadequate reimbursement and longer clinic visit lengths. Furthermore, in addition to a small number of specialists, the care is time consuming and that limits the number of visits that each specialist can provide.

Luckily we have slightly improved the residency training experience. Currently, the ACGME requires that all pediatric residents have a one-month rotation in Developmental-Behavioral Pediatrics. Despite this required 4-week educational experience in DBP, many pediatric residents miss some of this educational time, usually by being assigned to other perceived more urgent activities. So unfortunately, although this is an improvement, it still not sufficient to promote the interest of Pediatric residents in the area. Without a focused approach to allow for deliberate practice, self-confidence in diagnosing and managing problems of behavior and development is unlikely to develop.

Pediatric Residency Programs should start incorporating more training in disabilities and mental health to the curriculum, in order to develop pediatricians who can counsel parents to recognize developmental concerns in a timely manner and feel confident with the diagnosis and management of children with ADHD, Autism and common mental health disorders. Pediatricians should be working on promoting not only physical but also emotional wellness. We can no longer deny that developmental, behavioral and mental health concerns are morbidities that threaten the health of large numbers of children, their families, and society.

References:

1.    Rosenberg, A. Training Gaps for Pediatric Residents Planning a Career in Primary Care: A Qualitative and Quantitative Study. Journal of Graduate Medical Education. 2011 Sep; 3(3): 309–314

2.    Julia, A. McMillan. Pediatric Residency Education and the Behavioral and Mental Health Crisis: A Call to Action. PEDIATRICS. Volume 1 39, number 1, January 2017.

3.    Soares, N. Developmental-behavioral pediatrics education in the United States: challenges in the midst of healthcare evolution. Int J Med Educ. 2017; 8: 396–399

Go Out on That Limb….

In the past, I have stayed mostly in my comfort zone and worked hard to avoid situations that made me uncomfortable, like talking with strangers and flying. However, since beginning my LEND training, I have made a commitment to step out of my comfort zone and try new things. So, I went out on a limb and decided to attend the annual AUCD conference in Washington, D.C. in November. I had the opportunity to attend many presentations and discussions surrounding a variety of disability issues. One of the main reasons I wanted to go to this conference was to meet people from around the country who were doing work related to inclusive childcare for children with disabilities, as this is one of my primary research interests. The conference was all that I had hoped for and more! Right away I met other AUCD members and trainees who were interested in the issue and I was able to collect a wide variety of resources to aid in my research. I was also able to network with other LEND trainees and faculty throughout the conference and hear about how their programs were supporting people with disabilities and share what we do in the Illinois LEND program with them. This exchange of information was at the center of many of the meetings I attended, and I was inspired by the interdisciplinary collaborations that lead to very productive discussions.

I also really enjoyed the Family Discipline events because it allowed me to connect with other people with similar lived experiences. My experience as a parent of a child with multiple disabilities has been very isolating, so I truly appreciated being able to have conversations with other parents who understood my situation. I left these meetings feeling motivated to pursue my research, advocacy, and policy goals to help improve disability services in Illinois.

This experience taught me that doing things that are out of your comfort zone can lead to amazing things! So, I encourage my fellow LEND trainees to attend a conference and do things that may be a bit uncomfortable in pursuit of your interests, values, life goals!

Stacee Leatherman

The Big P: Parent Partnership by Megan Mutti

Recently I learned that a local school district coded their parents and students as they were passed from one grade to the next in order to let the next teacher know a bit about what to expect. For parents, a small “p” might be interpreted as easy to work with; not challenging. A large P”, on the other hand, pointed out a challenging parent, perhaps one that took more time, maybe one who could be seen as frustrating or demanding. When I first heard this, I laughed. I knew without a doubt there was likely a GIANT P by my name somewhere, one that slowly but steadily grew over time, large enough to fill the entire page by the time we got to the end of high school with my daughter – a lovely, creative, kind young lady who happens to have IDD and Autism.

What assumptions do we make about “challenging parents” within special education and how does the system inadvertently create parents that push schools to the point of discomfort? Challenging parents, and I proudly wear that title, are often reluctant self-made experts. They have been forced to explore the community, collaborate with other parents, challenge policy, become familiar with curriculum and services, and navigate invisible barriers. They are creative, resilient, and fully invested in their child having the best possible outcome. But, they are tired, sometimes short-tempered, and often impatient. So, how to deal with the pesky problem of challenging parents? Invite them in…

Invite those tired, challenging parents to the table. Welcome their guidance and authentically consider their perspective in policy and program design. Keep them at your side, and ensure that they are true partners in developing new ideas. Parents know about systems in a way that school administrators often

(Picture: Colorful collage including drawings of people, symbols, and words: Design and Collaborate)

don’t, simply because they have to. Parents understand the reality that many systems designed for those with IDD simply do not work, or are fraught with serious problems. Work with these parents to build a shared understanding about what is needed in a school culture and curriculum to ensure everyone has a voice.

Parents are invaluable partners in effective quality improvement and their presence forces a level of transparency, accountability and creativity that might not happen otherwise. So, look beyond the traditional role of a parent within the school system – school fundraisers, PTA, booster club, sports, and bake sales, as most “big P” parents had to leave those behind long ago. Instead, ask parents to talk with you about quality and equity, about their fears and hopes for their children, about programs and policies that include and support students who learn differently. The big “P” should come with some glitter, maybe written in bright pink – to grab your attention that a partner is coming your way. A weary, tired partner that won’t give up, who is simply looking for a seat at the table.

More on parent partnership:

https://www.rethinked.com/blog/blog/2016/09/06/parent-engagement-ideas/

https://www.igi-global.com/chapter/parents-as-partners-in-the-special-education-process/170136

http://digitalcommons.providence.edu/cgi/viewcontent.cgi?article=1011&context=socialwrk_students

https://www.readingrockets.org/article/understanding-concerns-parents-students-disabilities-challenges-and-roles-school-counselors

https://ies.ed.gov/ncee/edlabs/regions/northwest/pdf/REL_2008064a.pdf

Subminimum Wages for People with Disabilities by Magale Avitia

The Fair Labor Standards Act of 1938

Did you know that people with disabilities are legally allowed to be paid less than the minimum wage? The Fair Labors Standards Act of 1938 created the right to a minimum wage, overtime pay, and set the standards to curb oppressive child labor. What was also included in this act was a clause to discriminate against people with disabilities. Section 14 (c) allows employers to apply for a certificate that allows them to discriminate employee compensation based on disability status. The employer determines the rate of people with disabilities based on quality and quantity of work, the wages of other employees doing similar work in the same area, and the objective gauge which measures productivity of disabled workers. Subminimum wages are not to be given to people with disabilities unless the disability impairs worker’s earnings or productivity capacity based on the work performed. Those disabilities include blindness, mental illness, developmental disabilities, cerebral palsy, alcoholism, and drug addiction.

Which employers participate?

(Image shows different company logos like VONS, Boeing, The Home Depot, The Medicine Shoppe, Walgreens, Merriam Webster, 3M, Best Western, and Pizza Hut) Image used from Bottom Dollars Documentary.

There are hundreds of employers throughout the United States who pay people with disabilities less than the minimum wage. In Illinois there are 146 employers with active or pending 14 (C) certificates. There are 8612 employees with disabilities in Illinois that are currently being paid less than the minimum wage.

You can find all active and pending 14 (c) certificate applications under the “Certificate Holders” tab using the link below.

https://www.dol.gov/whd/specialemployment/

How does it impact people with disabilities?

Watch this snippet of how subminimum wage impacts people with disabilities straight from their voices.

https://www.youtube.com/watch?v=g1oUKv8ji8w

What can you do?

CALL YOUR LEGISLATORS and tell them to vote YES on Raise the Wage Act which will phase out the subminimum wage practice for people with disabilities!

Illinois Senators

Tammy Duckworth – (312-886-3506)

Richard Durbin – (312-353-0150)

References

The Employment of Workers with Disabilities at Subminimum Wages (2008). In U.S. Department of Labor. Retrieved from https://www.dol.gov/whd/regs/compliance/whdfs39.htm

Wage and Hour Division (2019). In U.S. Department of Labor.

Importance of Trauma-informed Care When Working with Parents of CYSHCN by Stacee Leatherman

Picture of Stacee’s son as an infant sleeping on blankets in a crib with a blanket over him and a tube in his mouth.

Being the parent of a child with complex health care needs and multiple disabilities is a journey of navigating medical, therapeutic, and educational systems. For me, this experience started with a long stay in the neonatal intensive care unit (NICU) with my son. We spent six weeks in a dark hospital room with beeping machines running around the clock, nurses and staff in an out, medical tests and procedures, and multiple surgeries. The first thing a doctor said to me when I walked into the NICU to see my son after he had been airlifted to the hospital was that this doctor suspected my son had a fatal genetic condition and would not live to be a year old. This trauma has stuck with me over the last six years as I watched my son grow into a happy-go-lucky, energetic, and loving six-year-old boy. Very few people understand the trauma that can be experienced during stays in the NICU and the lasting effects it can have on families. Providers who will be working with this population need to receive continued training on the use of trauma-informed practices.

A study conducted by Duke University found[KA1] [SL-S2]  that, out of 30 mothers of premature babies who stayed in the NICU that were interviewed, all reported having at least one PTSD symptom such as increased arousal, avoidance, or flashbacks, while 12 mothers reported having two symptoms and 16 reported having three (Holditch-Davis, Bartlett, Blickman, & Miles, 2003; Tarkan, 2009). I have personally experienced these symptoms on and off for the last six years but did not understand what was going on until I recently read a blog post, titled We Need to Talk About PTSD in NICU Parents, which discussed the feelings of grief, fear, and anxiety that parents experience and the lasting impact this has over time (Ogilvy, 2017). Parents can remain in a constant state of hyperarousal, even after leaving the NICU because they are taking home a medically fragile child. This child may have medical devices, special feeding arrangements, seizures, or any number of health concerns. Family support may fade after returning home from the NICU and parents can find themselves feeling isolated and overwhelmed by their new responsibilities and lack of support (Tarkan, 2009). 

Given this information, what steps can be taken to better support NICU parents? Some hospitals utilize a peer support model where current NICU parents receive support from former NICU parents. This can reduce anxiety and depression and increase social support for parents (Tarkan, 2009). Another suggestion is to have more hospitals focus on improving supports for parents after leaving the NICU, such as ensuring they are enrolled in EI services, have a local pediatrician, schedule upcoming medical appointments, and connect them to community resources such as family support groups. The utilization of the coordinated-care model, or medical home, could be a great way of extending the parental support network after families leave the NICU. If physicians and therapists are easily accessible and work collaboratively to serve an individual over the lifespan, families would have a consistent support network. Finally, providers serving this population of CYSHCN and their families should engage in trauma-informed care practices and do their best to be sensitive and supportive to families, while including them as valued members of the treatment team.

References

Holditch-Davis, D., Bartlett, T.R., Blickman, A.L., Miles, M.S., (2003). Posttraumatic stress symptoms in mothers of premature infants. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 32(2), 161-71.

Ogilvy, C. (2017). We need to talk about PTSD in NICU parents. The Mighty, April 4, 2017. Retrieved from: https://themighty.com/2017/04/ptsd-nicu-moms/

Tarkan, L. (2009). For parents on NICU, trauma may last. The New York Times, August 24, 2009. Retrieved from: https://www.nytimes.com/2009/08/25/health/25trau.html

 [KA1]Were these all mothers with babies with NICU stays. I would specify- Univerisity about …

 [SL-S2]Yes, these were mothers of NICU babies.

Picture of Stacee’s son as a young boy in a blue t-shirt and shorts with sneakers on sitting on a picnic bench holding one leg with his arm and smiling.

P R E P A R E , P R E S E N T , P L A N F O R F U N by Brandie Bentley

I attended the American Public Health Association's (APHA) Annual Meeting and Expo, November 3, 2019, in Philadelphia, PA. APHA's Annual Meeting and Expo is the largest annual gathering of Public Health professionals who connect to learn more about innovative practices occurring across the nation. Using my experience as a guide, I have developed three tips for making the most of a

national conference.

1 . P R E P A R E

Preparing for a national conference can become incredibly overwhelming, fast. Managing a schedule, organizing travel, and designing your presentation, all while maintaining academic

responsibilities, is not an easy feat! Below are a few things I did to help ease the stress:

Review the Conference Agenda:

Before attending the conference, I explored the APHA 2019 Mobile App, which proved to be a

beneficial tool for reviewing the conference agenda and highlighting key sessions and events of

interest. Preparing ahead of time allowed me to keep up with important reminders and effectively

manage my conference schedule.

Search for Travel Deals:

As Graduate students, being financially savvy is a necessary skill. Before booking travel, check if

the conference host offers deals or student discounts you can apply to lower your travel costs.

APHA offered significant flight and hotel discounts for registered members.

I also packed items that were easily compacted and lightweight to avoid additional airport fees.

Designing Your Presentation:

Review presentation guidelines as you develop your presentation aids. UIUC has a list of useful

resources for preparing oral and poster research presentations that I used when creating my poster:

https://undergradresearch.illinois.edu/guideline s.html

APHA also detailed poster guidelines that included tips for creating an accessible poster design.

You can learn more by selecting the following video link: https://www.youtube.com/watch?

v=1RwJbhkCA58&feature=youtu.be

2 . P R E S E N T

There is a true science to presenting an effective research poster. Here are a few ways to be your

best self, nail your elevator pitch, and successfully engage with your audience during a poster

presentation:

Conference with Style:

When choosing what to wear for a conference, remember to dress comfortably. Know your audience and

tailor your clothing to what is most appropriate for the setting.

Whenever I present, I select styles that make me feel my personal best as it increases my

confidence in delivering a powerful talk!

Elevator Pitch:

Mastering an elevator pitch of your research is essential for an effective poster presentation. An

elevator pitch allows you to relay who you are, the purpose and importance of your study, and key

findings in a concise manner that will interest your audience.

I practice my 30 second and 3-minute pitch with others until it's perfect. The following link

provides additional tips for creating an elevator pitch: https://uclalibrary.github.io/research-

tips/deconstructing-the-elevator-speech/

Engaging your Audience:

APHA is an interdisciplinary conference that highlights research across several health- related

disciplines. I presented my poster, entitled Evaluating Community Systems Development Efforts to

Improve Early Childhood Outcomes in Illinois, in the Public Health Social Work: Children, Youth,

and Families Section.

In addition to my poster, I also created a supportive handout that provided additional information

about my study. It was an excellent tool for engaging my audience and contextualizing the

interdisciplinary relevance of my research.

3 . P L A N F O R F U N

Conferences present a fantastic opportunity for networking, knowledge sharing, and excitement all

in a single location! Be sure to plan for fun by checking out vendors in the expo hall, exploring

the city, and connecting with others.

Experience the Expo:

The APHA expo is a large exhibition filled with Public Health companies, organizations, schools,

and programs, all sharing the latest developments in research and practice.

At this year's expo, attendees could visit poster presentations, have their professional headshot

taken, and stay up-to-date with innovative initiatives, like rePROs Fight Back, a podcast fighting

for reproductive health, rights, and justice.

Explore the City:

Philadelphia has lots to offer!

During my visit, I was able to enjoy a "piece of Philly" by dining at restaurants loved by the

locals. When traveling to conferences, I always try to find a way to experience unique aspects of

each city to add to my overall cultural enrichment.

Connect with Others:

Conferences are always great for connecting with others. It is important to keep the momentum going

even after the conference ends. Be sure to follow up with a personalized note to keep connections

going strong!

THANK YOU!

My attendance was made possible through the support of IL LEND. I would like to extend my sincere

gratitude and appreciation for this exceptional opportunity to grow as a scholar and LEND Trainee!

Brandie Bentley, Social Work UIUC

Teaching your child to communicate effectively with their peers By Olivia Hacker

Communication is an essential part of our daily lives. Communicating with each other and our surroundings can help us to learn more about the world, express ourselves, and build genuine relationships. However, it’s important to note that every individual communicates in a different way- we can communicate verbally, non-verbally, through writing, or visually, based on our environment, context, or personal ability. As a future Speech-Language Pathologist for children with developmental disabilities, I believe that my role is to help children work through their speech, language, or communication difficulties, while also educating typically developing children on how to properly interact with their peers who may communicate in a non-typical way.  

One of the main symptoms of autism spectrum disorder (ASD) is social communication challenges, such as difficulties with spoken language, gestures, eye contact, facial expressions, and tone of voice. Some children with ASD may have limited speaking skills, or talk about certain topics with significant detail and specificity. Some children may have an augmentative and alternative communication (AAC) device. In fact, about one third of individuals with ASD are nonverbal, evidently causing a communication barrier with other children their age (“Autism Facts and Figures,” n.d.).

However, I think it is important that we teach our children (from a young age) how to effectively communicate with those who may express themselves differently, in order to promote respect and inclusion for people of all abilities. Rather than labeling kids with disabilities as “weird,” “different,” or “special,” we should be teaching our kids how to avoid ableism, or the discrimination against people with disabilities. 

By having an open dialogue, parents can educate their children on disability, and avoid discrimination against those who may communicate differently. With the rise of inclusion-based programs in the school systems, it is inevitable that children will be learning with other children who have developmental disabilities, such as ASD. As children grow up, they may start to ask questions about other children in their classroom who may have different ways of communicating. Here are some tips to teach your children the beauty of INCLUSION and promoting friendship among all children.  

• Explain to your child that ‘communication’ does not just refer to verbally speaking. Communication comes in many different forms, such as pointing to pictures, using a talker device, etc.

• Everyone has different likes and dislikes (food, hobbies, etc.), but many times we can have things in common, as well. Encourage your kids to look for those commonalities among classmates!

• Be empathetic – everyone processes their sensory input differently.

• Respect their personal ‘bubble’ - Not everyone likes to be touched, so give them the space they need to feel comfortable.

• Be patient - When communicating, give them extra time to think about their response, rather than giving them more verbal input than necessary.

• Consider teaching your children the basics of sign language, as this could be helpful in various points throughout their lives.

• When communicating, use eye contact, simple phrases, and a loud, direct voice.

• Include everyone!!!

Here is a great video from the TODAY show featuring some of the cast members of Sesame Street, including Elmo and his friend Julia (who has autism). This is a great video to watch in order to help teach your kids how to be a good friend to someone who has autism. 

https://www.youtube.com/watch?v=sNms-nmhCEI

References:

Autism Facts and Figures. (n.d.). Retrieved September 19, 2019, from Autism Speaks website: https://www.autismspeaks.org/autism-facts-and-figures

Social communication in autism, explained. (2018, April 19). Retrieved September 20, 2019, from Spectrum | Autism Research News website: https://www.spectrumnews.org/news/social-communication-autism-explained/

What To Know About Being A Good Friend To Someone With Autism, According To Sesame Street | TODAY - YouTube. (n.d.). Retrieved September 20, 2019, from https://www.youtube.com/watch?v=sNms-nmhCEI

Cultural Competency Caution and Care for Clinicians and the Community

Picture credit: Photo by Sharon McCutcheon on Unsplash 

[The picture above depicts someone’s open left hand with fingers together with a plain blue background. Upon their hand is a variety of colors swirled together in a seemingly random pattern]

As behavior analysts, our code of ethics demands a certain level of competency when ethically changing the behaviors of others.  With the footholds of globalization creeping onward, and a nation’s populace that is growing increasingly diverse (Fong & Tanaka, 2013), being culturally aware of the clients and their families in which this caring profession serves is paramount.

Translation? People have different abilities, repertoires, practices, and values that affect the way they behavior with themselves as well as others in their communities. In order to be effective in this world where borders are disappearing and travel is becoming exponentially less expensive, being culturally competent is, perhaps now more than ever, something that is necessary.

For the purposes of this article, culture will be defined as a group’s shared beliefs, values, and behaviors which are supported [through rewards and punishments to exert control] by others within their communities, broadly defined (Fong & Tanaka, 2013; Skinner, 1971). This can include ethnic groups, ability groups, groups that share values (religious, educational, etc.) which is a very broad definition. So much so, it might be ineffective to really target “cultural competency” on a whole. Which culture do we target? Are their overarching values across all cultures? People can, to complicate the analysis further, be at the intersection of two or more cultures (e.g. disability and ethnicity).

In my experience, awareness is not enough – there needs to be an awareness and analysis of not only those we serve, but of our own behaviors and perceptions as well. Clinicians’ learning histories and experience may affect the way they interact with others and ultimately, impact the quality of care for those they serve. Beyond clinical outcomes, these factors may also impact to the degree to which patient-focused care is implemented. As a result, I have compiled a few tools that may be helpful as a starting point for future clinical and research use. Each table below includes a hyperlink to a completed document that can be viewed on Google Drive.

·         Table 1 includes a direct translation from Fong and Tanaka (2013) about how behavior analysts can include more culturally competent behaviors and values when working with others who may differ from them in a variety of ways. Future research could directly test the utility of each of these as it applies to clinical outcomes, therapist comfort in application, as well as how the people receiving services reacted – were their values included in on planning? Were the goals meaningful for them after they were reached?

·         Table 2 depicts a variety of disability microaggressions that Keller & Galgay (2010) compiled that not only defines, but gives vocal-verbal examples of what these look like. Future clinical research could look at the frequency of how often these microaggressions are emitted then can be directly taught to clinicians regarding avoiding these or ways that do not promote a microaggression component.

·         The Developmental Model of Intercultural Sensitivity (DMIS) is a tool that helps others to conceptualize where one might be between ethnocentrism (and inflexible towards other cultures) and ethnorelativism (flexible and integrating other cultures within self). Table 3, thus, was my attempt to applying this model to more concise behavioral commentaries in order to create actionable steps for applying in a clinical setting.

Perhaps the above resources only add to the concepts of saying, “look! Things are different! Respect that!” My hope are that others can use these resources and start applying it in their own clinical and community contexts. Actions speak louder than words, but if we do not have the right words to define what actions need to take place, we are lost in the static and nothing changes.

Be the change. Collaborate with others (including those you serve). Be aware of your own actions as it relates to working with others.  

By Rocco Catrone

References

Fong, E., & Tanaka, S. (2013). Multicultural alliance of behavior analysis standards for cultural    competence in behavior analysis. International Journal Of Behavioral Consultation And             Therapy, 8(2), 20-22.

Keller, R. M. & Galgay, C. E. (2010). Microaggressive experiences of people with disabilities. In D. W. Sue (Ed.), Microaggressions and marginality: Manifestation, dynamic, and impact        (pp. 241-267), Hoboken, NJ: John Wiley & Sons, Inc.

Skinner, B. F. (1971). Beyond freedom and dignity. Acton, MA: Coupley Publishing Group.                      Originally published in 1957 by the Meredith Corporation.

Inspiration Porn….What the heck?

This image is of a little boy running in what appears to be a race by the race bib on his shirt. The boy is smiling. He has 2 prosthetic legs. The text across the pic says “Your excuse is invalid”

When I first heard this term, I was confused. I didn’t really understand it and thought it was odd. Basically, inspiration porn is using people with disabilities as an example of inspiration or motivation for able bodied people. We’ve probably seen these pics on Facebook or even shared them as well. I am definitely guilty of sharing these photos and videos in the past.

Some examples of inspiration porn are when people post that they asked someone with Down’s Syndrome to prom, or highlighting the fact that the America’s Got Talent winner was someone who had autism, or like the picture above of a person with a different ability doing something ordinary and we call them ‘inspirational’.

But why? Why do we think these people are inspirational? Why do we feel the need to share these? Why is this actually harmful?

I recognize that I am an able-bodied person writing this post and my views in this space are limited. I highly recommend you watch the Ted Talk featuring Stella Young called “I’m not your inspiration, thank you very much.” I also recommend you actually get out and talk to people who identify as having a disability and start that conversation.

I reached out to one of my friends who uses a wheelchair as her primary means of mobility to get her opinion. I asked her what she would like people to know about why sharing this content is harmful. She shared with me her opinion that people only think these things are inspirational because the people featured are people with disabilities. If it weren’t for that, people wouldn’t think twice.

She also commented that it’s really not inspirational or a good deed to invite someone who has a disability to a party or prom. Why would you be nice to someone just because they have a disability? That’s actually pretty hurtful.

So really think next time you feel that urge to share that pic or video… Are you objectifying people with disabilities?

Logan Kovacs