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

AAIDD: Translating Knowledge to Power and Practice

The American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting was held in late June in St. Paul, MN. There was a significant Illinois LEND presence at the meeting, with multiple LEND alums presenting at the conference. Notably, IL LEND faculty member Meghan Burke received the AAIDD Early Career Award.

The conference theme was Knowledge Translation: Power in Research, Policy, and Practice. Knowledge translation is the act, intention, and processes by which information moves from academia to communities, from researchers to citizens, leaders, and professionals. LEND is a form of interdisciplinary knowledge translation, where research and clinical trainees work in collaboration to inform one another’s practice.

In the context of disability research and policy, knowledge translation becomes an essential access tool. For our work to be meaningful, it should be accessible and actionable to the disability community. How can your work be translated to disability communities?

Research

1. Explore and answer questions that the disability community is asking.

2. Ensure your research design, especially the informed consent process, is accessible for participants with varied communication skills, technology and language access, and levels of understanding.

3. Create opportunities for disabled collaborators as both participants and members/consultants of the research team.

4. Create and distribute open access, plain language summaries of your findings. Meet with community leaders to discuss ways that research can inform change.

Clinical Practice

1. Keep up with current research, especially research that meaningfully incorporates disabled people’s perspectives.

2. Work carefully with patients and clients to ensure that they understand and consent to exams, evaluations, and treatment plans.

3. Challenge ableist ideas and assumptions within your school, clinic, practice, or firm.

Policy/Advocacy

1. Uplift the voices of disabled self-advocates and their policy priorities.

2. Volunteer to ensure that polling places, town halls, and other forums for civic engagement are accessible.

3. Write letters or call or email or visit your representatives. Support disabled people in writing, calling, and visiting as well.

Above all, allow disabled individuals and communities to inform your work, center their perspectives, and continue to fight for a more equitable and accessible world. Knowledge is power.

 By Helen Rottier

What is public health? And how does it relate to children with disabilities?

A common question I have received since deciding to pursue a career in public health is “What is public health?” and “How does your interest in children with disabilities relate to the public health profession?”. Both questions are equally valid and worth exploring as the general population is often unaware the role a public health professional plays in their everyday lives. I think many people still have an image of the community public health worker travelling to neighborhoods to administer vaccines, checking on the sanitation of a local restaurant, and even linking families to resources in their communities to ensure food security. While these roles are still important in ensuring the wellbeing of communities, the role of a public health professional has expanded considerably.

Public health seeks to prevent poor health outcomes, such as chronic disease, infectious disease, and injury/violence through largescale efforts that effect change at a population or community level. This is in contrast to say, what a physician might do, which is treat an individual after they have acquired a poor health outcome (ex. treating someone for diabetes).  Working at a population level and on the prevention-side allows public health professionals to prospectively address health concerns. In order to do so, public health professionals may take a systems level approach where changes have far-reaching effects (meaning, effects an entire community versus an individual) and improve long-term health outcomes; essentially, allowing you to get the most “bang for your buck”.

For example, in terms of public health work and children with disabilities lets imagine this scenario:

Children with disabilities often experience bullying at a higher prevalence than their peers. This leads to a greater rate of poor mental health outcomes. A psychologist/social worker might approach this problem by providing the best treatment approach, such as cognitive behavioral therapy for a child with disabilities who experiences bullying. A public health professional would approach this problem by first conducting research to understand the etiology of the bullying problem. Then, perhaps, they would work to develop a campaign that increases awareness in the community about bullying. Further, they would elicit change via the policy route or through systemic changes by altering protocol to ensure that educators and health care providers routinely screen for bullying. All with the intention to prevent bullying and the associated poor mental health outcomes.

However, for clarification, disability does not inherently equal poor health. Disability is not synonymous with unhealthy because an impairment does not necessarily diminish physical/mental health. Disability is largely a result of inaccessible environments and is a socially constructed phenomenon. People with disabilities do not need to be “fixed”, rather the barriers (inaccessible buildings, communication challenges, etc.) they encounter need to be addressed. These barriers can cause those with disabilities to experience health disparities, which put them at greater risk for poor health outcomes.

Formally, public health has 3 core functions: assessment, assurance, and policy development. Further, there are 10 essential services, which you can read about by following this link: https://www.cdc.gov/publichealthgateway/publichealthservices/essentialhealthservices.html

I encourage you to explore the following resources to expand your understanding of what public health is, and how public health and disability are intertwined.

http://www.phi.org/focus-areas/?program=center-on-disability

https://www.who.int/news-room/fact-sheets/detail/disability-and-health

https://disabilityinpublichealth.org/

https://nationalcenterdph.org/

Victoria Eickelberg

Inclusion should be a right, not a privilege: Transcending Language Barriers in the Disability Community

Retrieved from Alamy Stock Phtos; Contributed by: Anastasia Ramaneka; No property rights

I have worked in a wide variety of settings and context throughout Chicagoland over the course of my last 4 years of training in a doctoral program in clinical psychology. I have worked in private practices in the upper-middle class communities in the Northwest suburbs, as well as community settings and hospitals in some of the underserved and marginalized neighborhoods on the southside of Chicago.

Whether this be Mandarin, Polish, Farsi, Arabic, French or any other language for that matter, there are not enough accessible resources for families whose predominant language is not English. Navigating “the system” is hard enough for English speakers, but if you add the language component to the mix, it becomes all the more difficult to access care. With the ever-mounting barriers, many families and their children end up not receiving access to resources simply because there are not enough translation services or multilingual providers available. This often results in exacerbated developmental delays that very well could have been addressed, had the services been available in the desired language of care. 

As a bilingual psychologist in training, I have specifically noticed the ever-growing demand and need for services for the Latin-x, Spanish-speaking community. In all of the settings I have trained in, the wait-list for the Spanish speaking patients is always nearly TWICE that of those who are English speaking. Further, many Spanish speaking Latin-X families get dragged back and forth between different settings without ever actually receiving the care and services they are seeking because of miscommunication with providers.

For this reason, I was extremely encouraged to hear about the work that Grupo Salto is doing here in Chicago. I was first exposed to this group through my experience as a LEND trainee. This group “… was founded by Latino parents of children with autism spectrum disorders (ASDs) and Hispanic program staff from the UIC Developmental Disabilities Family Clinics (DDFC) in 2003.” “Grupo SALTO aims to provide support for Latino families that have children with ASD by providing culturally and linguistically appropriate training, education, and services (LEND Brief, 2015).”

Retrieved from Shutter stock Photos;; No property rights

I had the opportunity to attend a Grupo SALTO screening event and conduct Autism Spectrum Disorder (ASD) screenings one morning. Through this experience, I got to speak with some of the parents who are involved in this group. It was absolutely amazing to hear about their individual experiences with Grupo SALTO, as well as their passion for advocacy and empowerment of other Latin-x parents who had children with ASD. This group is providing an amazing and greatly needed space and sense of community to a community that is often overlooked and marginalized by the larger systems.

By Vanessa Aguilera

The Latinx perspective on autism By Natalia Baires

From 2014 to 2060, it is estimated that individuals of Hispanic or Latino/a origin will increase to about 115% (Colby & Ortman, 2015). Given the growing presence of this population in the United States, there are various implications for clinicians and professionals serving Latino/a individuals who have autism and related developmental disabilities.

It is estimated that the current prevalence of autism among children is 1 in 59 (Baio et al., 2018). For children who come from diverse racial and ethnic backgrounds, obtaining a diagnosis of autism may present its own unique challenges, such as low socioeconomic status, decreased access to health insurance, and having English as a second language. As a Spanish-speaking clinician who worked with Latino/a families who had children with autism, most, if not all, of my clients were of low socioeconomic status and had caregivers who were monolingual Spanish speakers. Working with these families led me to see firsthand the unique challenges that perhaps other ethnic and racial groups do not face as often, such as high turnover rate with behavior therapists due to the neighborhood the client lived in or having to directly communicate with me as the supervisor who was in the home once a week instead of with the therapist who was there multiple days a week due to language barriers.

Particularly for the Latino/a community, knowledge and perceptions of autism, parent and family factors, and health care system factors are three barriers identified regarding Latino/a children not receiving a diagnosis of autism (Zuckerman et al. 2014). Caregivers of Latino/a children with autism often express that there is limited knowledge and developmental resources pertaining to autism in the Latino/a community, which prevents early diagnosis and services to take place (Zuckerman et al., 2014). Even when developmental resources are available, they lack in quality, are poorly translated into Spanish, or use medical jargon, which is problematic for caregivers of lower reading levels. Moreover, knowledge of autism is perhaps even less in Latin American countries, where autism “does not exist” and there is a stigma regarding mental health and disabilities.

As clinicians and professionals who work with diverse populations, we should be more culturally competent and thoroughly take cultural and linguistic factors into consideration when planning for assessment and treatment. Fostering cultural competence can lead to great outcomes for clients of diverse ethnic and cultural backgrounds receiving services because it can strengthen the quality of services. Some considerations that clinicians and professionals are advised to take into account include having a culturally relevant, respectful, and collaborative approach to delivering treatment instead of imposing values and interventions that do not align with Latino/a values (e.g., family and respect; Parra Cardona et al., 2009). For instance, although I identify as Latina, I was born in the United States, which is not the case for the caregivers of the clients I was serving. Although we share the Latino/a culture, I also grew up with American values, which can differ from Latino/a values. I remember oftentimes where I would advocate for strengthening the client’s independence with self-help skills, such as showering, and observing that caregivers were not completely following procedures that they had agreed to. It was not until I did some self-reflection that I realized I was imposing some of my personal American values on the families I was working with. Even though I recognized that mother figures value taking care of things for others in the family in the Latino/a culture, I was not being respectful or mindful of that aspect and instead imposing what I thought was “correct” as a second-generation Latina working with Latino/a families who immigrated to the U.S.

Another way for clinicians to be more mindful of cultural and linguistic factors includes being aware of when racial microaggressions are emitted, which are verbal or non-verbal behaviors, whether intentional or unintentional, that communicate hostile, derogatory, or negative racial slights and insults toward people of color. Examples of this include assuming a Spanish-speaking family is from Mexico when in actuality they are from a country in South America or assuming a Latino/a individual automatically speaks Spanish. Instead of assuming things about a culture, we should simply ask the families we serve. And instead of approach services as an “it’s my way or the highway approach,” clinicians should instead collaborate with the families they serve to further promote the well-being of the client.

References

Baio, J. Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., … Dowling, N. F. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years - Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report Surveillance Summary 2018, 67, 1-23. doi: 10.15585/mmwr.ss6706a1

Colby, S. L. & Ortman, J. M. (2015). Projections of the Size and Composition of the U.S. Population: 2014 to 2060, Current Population Reports, P25-1143, U.S. Census Bureau, Washington, DC, 2014.

Zuckerman, K. E., Sinche, B., Mejia, A., Cobina, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives of barriers to autism diagnosis. Academic Pediatric, 14, 301-308. doi: 10.1016/j.acap.2013.12.004

Behavioral Science in the 22nd Century

Behavior Analysis is a parsimonious science that explains human behavior as a function of its’ environmental context (Catania, 2013; De Houwer, Barnes-Holmes, & Moors, 2013). This science defines behavior in measurable observable ways to allow for objective evaluations of the unique contexts under which behavior occurs. The context in which behavior occurs explains the instrumental nature of the behavior for the individual. That is, the need the behavior fulfills for the individual behaving. Context of behavior can be described as what happens before, and what happens immediately after the behavior. The context describes what is often called a functional relationship between environment events and behavior (Catania, 2013). Trying to understand behavior from the perspective of environmental contexts may avoid internal labels for causes of behavior, as well as possible blaming of the individual or community (Skinner, 1972).

           There are additional factors to be considered when analyzing behavior in Behavior Analysis. These include species-specific structures, and species-specific survival responses to specific environmental contexts. For example, certain behavior has been selected genetically over the course of evolution to ensure the survival of the species. This produces specific structures across different species or ethnic groups. The gag response we all experience when we eat rotten food is an example. This looks the same across multiple people and has been chosen over various generations because it guarantees that we all survive, as rotten food could produce some very difficult medical conditions, which could possibly result in death. Similarly, cultural practices are also considered when analyzing behavior. Cultural practices, like individual behavior and genetic predisposed responses, operate around environmental context (Biglan, 1995). The cultural practices are selected due to the survival value such practices affords the majority of individuals within the culture. For example, our cultural environment in the USA selects practices like long summer vacations for students, because many years ago, these practices guaranteed help to harvest crop which provided food and income (Pederson, 2012). Other cultural practices that have value in today’s society include, presidential elections, baby showers, potlucks, block parties etc. Each of these practices occur in specific situations, and have certain preferable consequences for specific cultures.

          As an applied science, Behavior Analysis allows society to focus on individuals and communities within their unique contexts to allow us to change behavior effectively to improve the quality of life for individuals and communities. Many demonstrations of this useful effect exist in literature and the environments around us every day (Altus & Morris, 2009). The traffic light signals and the email notification sounds are some everyday examples of how the powerful principles of Behavior Analysis help us better our lives today. The contextual approach to understanding behavior provided by Behavior Analysis allows for easy integration into other fields of study such as evolution science (Biglan, 2018). By integrating the contextual approach to analyzing behavior of individuals/groups into fields like evolution science, we may be able to understand situations that make behavior/cultural practices more probable, as well as identify their maintaining consequences. This integration may allow for a more cooperative research and practioner community necessary to address cultural challenges such as racism, lack of disability rights, ableism and other social issues. I do not have data to support this, however I believe analyzing these issues from a cultural level while evaluating the context, may allow us to determine the functional relationships between certain cultural practices and our community’s needs. As a result, we may be able to make changes to the maintaining variables of these practices to change such practices effectively. In addition, we may also be able identify the needs fulfilled by these practices, so we can provide them non-contingently, eliminating the need for such practices to occur in the first place.

         As our society moves into the 22nd century, there is a need to harness the powerful empirical findings from our most effective scientific fields to improve our lives. Our societies are not the same welcoming, beautiful and nurturing communities they use to be. Issues such as lack of disability policy, ableism, health care disparity, racism, and pollution to mention a few, threaten the survival of our society as a whole. As LEND trainees, I encourage you to reach out to fellow trainees to learn about their fields and effective scientific advancements in these fields. How can all these findings be combined into a comprehensive research and practice framework? Let us all rely on empirical evidence to drive effective action for all members of the community as a whole. Replicate practices based on empirical evidence, either through research or observable evidence from practice. Welcome diverse opinions and try to examine behavior within its context, it makes a big difference. Here is an interesting website from Behavior and Social issues https://firstmonday.org/ojs/index.php/bsi.

 References

Altus, D. E., & Morris, E. K. (2009). BF Skinner’s utopian vision: Behind and beyond Walden Two. The Behavior Analyst, 32(2), 319-335.

Biglan, A. (1995). Changing cultural practices: A contextualist framework for intervention research. Context Press.

Biglan, A. (2018). Evolution and contextual behavioral science: An integrated framework for understanding, predicting, and influencing human behavior. New Harbinger Publications.

Catania, A. C. (2013). Learning (5th ed.). Cornwall-on-Hudson, NY: Sloan Publishing. 

De Houwer, J., Barnes-Holmes, D., & Moors, A. (2013). What is learning? On the nature and merits of a functional definition of learning. Psychonomic Bulletin & Review, 20(4), 631-642.

Pedersen, J. (2012). The History of School and Summer Vacation. Journal of Inquiry and Action in Education, 5(1), 54-62.

Skinner, B. F. (1972). Beyond freedom and dignity (No. 04; BF319. 5. O6, S5.). New York: Bantam Books.

 Kwadwo Britwum

Autism in Women: Critical Awareness and a Call to Action by Hena Thakur

In the United States, 1 in 59 children are diagnosed with autism and prevalence rates are currently higher among males than among females (Baio et al, 2018). At first glance, these statistics may suggest that autism is a predominantly “male” condition. In fact, media outlets, such as the television show Atypical, overwhelmingly portray individuals with autism as male characters. Recent investigations, however, have emphasized that our current screening and diagnostic systems are suboptimal for detecting autism among females.

Relative to males, females must often display more impairing symptoms, as well as a higher severity of behavioral and emotional concerns, to meet criteria for autism (Dworzynski, Ronald, Bolton, & Happe´,2012; Russell, Ford, Steer, & Golding, 2010). Current explanations for this discrepancy include the proposition that diagnostic systems, which have been developed and validated within male only samples, do not adequately capture characteristics of autism that are found among females (e.g., Lai, Lombardo, Auyeung, Chakrabarti, & Baron-Cohen, 2015). For example, females are less likely to demonstrate externalizing behavior, which reduces the likelihood for referrals for evaluation and recognition of repetitive/stereotyped behavior (Van Wjingaarden-Cremers et al., 2014). Receiving a diagnosis earlier rather than later can help improve quality of life, thus adequate screening and assessment procedures for females deserve further attention.

For an emerging clinician-researcher, these discussions have highlighted the importance of thinking critically about the methods and materials we use to screen and diagnose individuals within clinical contexts. It is encouraging to witness these conversations occurring across different platforms, including autism specific blogs, mainstream news outlets, and academic journals. In addition, institutions such as the University of Illinois Autism Clinic (UIAC) and The Autism Program at the University of Illinois (TAP), are teaming up to provide a women’s group for female adolescents with autism. During these sessions, adolescents will have an opportunity to discuss a wide range of topics, including social skills, executive functioning, and sexual education. Although not directly addressing the issue of diagnosis, this initiative acknowledges and celebrates a sub-population of the autism community that has long been overshadowed.

Photo Description: A woman is looking down with her left hand against her forehead. She is surrounded by waves consisting of different shapes, including rectangles, triangles, and swirls.

Photo credit: Rebecca Hendin/ BuzzFeed, www.buzzfeed.com

References

Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., ... & Durkin, M. S. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveillance Summaries, 67(6), 1.

Dworzynski, K., Ronald, A., Bolton, P., & Happe´, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? Journal of the American Academy of Child and Adolescent Psychiatry, 51(8), 788–797. doi:10.1016/j.jaac.2012.05.018.

Lai, M.-C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child and Adolescent Psychiatry, 54(1), 11–24. doi:10.1016/j.jaac.2014.10.003.

Russell, G., Ford, T., Steer, C., & Golding, J. (2010). Identification of children with the same level of impairment as children on the autistic spectrum, and analysis of their service use. Journal of Child Psychology and Psychiatry and Allied Disciplines, 51(6), 643–651. doi:10.1111/j.1469-7610.2010.02233.x.

van Wijngaarden-Cremers, P. J., van Eeten, E., Groen, W. B., van Deurzen, P. A., Oosterling, I. J., & van der Gaag, R. J. (2014). Gender and age differences in the core triad of impairments in autism spectrum disorders: A systematic review and metaanalysis. Journal of Autism and Developmental Disorders, 44(3), 627–635.

Neurodiversity: It’s Okay to Think Differently!!

As a disability studies trainee and proud neurodivergent person, I wanted to share a little about neurodiversity, the movement of acceptance for all ways of thinking, learning, and being.  Neurodiversity recognizes that differences which have historically been pathologized are not inherently harmful or problematic. The neurodiversity movement believes these natural differences in neurotype (how one’s brain functions) should be celebrated, rather than corrected. Though neurodiversity was initially championed by autistic self-advocates, it has grown to include those with intellectual disabilities, ADHD, learning disabilities, mental health conditions, and other disabilities that affect how one thinks and feels in the world. Though the history of the term is unclear, it has been attributed to both Jim Sinclair, an autistic advocate, and Judy Singer, an autistic scientist.

There are also misconceptions and criticisms of neurodiversity, even from those within the neurodivergent community. One common misconception is that individuals who believe in neurodiversity reject all medication, therapy, and other interventions to address their condition. While neurodiversity recognizes the value in different ways of thinking and being, individuals are encouraged to make decisions about treatment, including medications, that work for them. Another misconception is the belief that neurodiversity is only for individuals who are labeled “high-functioning” or have low support needs. The community rejects functioning labels because how well one functions is contingent on how well their needs are being met. Neurodiversity recognizes the dignity of individuals who have different support needs, including those who use assistive technology and live interdependently, contributing to and benefiting from life in community. Neurodiversity also challenges expectations of “normal functioning,” which value certain ways of moving, communicating, living, and working over others. Such expectations are especially pervasive in schools and workplaces, creating a substantial barrier to education and employment for neurodivergent people.

Disabled people, especially those with developmental, learning, and psychiatric disabilities, experience internalized ableism and shame about who we are. Neurodiversity provides the opportunity to celebrate ourselves and our communities. As clinicians, advocates, and professionals, understanding neurodiversity can help you to understand and respect your patients, students, or clients who think differently.

Helen Rottier