The CACTI
(Community Advisory Council & Trainee Infoshare)

clipart of saguaro, ocotillo and barrel cactusThe CACTI (Community Advisory Council & Trainee Infoshare) is the Sonoran UCEDD's blog featuring the voices of our interdisciplinary trainees and Community Advisory Council (CAC) members as they highlight diverse images of people with disabilities and provide community information and advocacy on disability issues. The Sonoran UCEDD recognizes the need for diverse stories, images, and viewpoints to raise public awareness and increase understanding in Arizona of people with developmental and other disabilities, their strengths, talents, and challenges. We hope you find The CACTI useful and informative.

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Expectations – My Experience Working with Students with Disabilities in Their First Job

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By Kayla Tilicki 
Sonoran UCEDD Trainee 2020-2021
Undergraduate Certificate in DD

When I was ten years old, I was diagnosed with dysgraphia. My whole approach to learning changed but the expectation for me to do well in school, go to college, and get a job never did. I was raised knowing I would go to college one day and never doubted if I was smart enough to get there nor did I expect my disability to hold me back on my journey.

Throughout my journey I have faced setbacks. I have been told that I would not be able to achieve my goals because of my deficits, but I believed in myself and had my parents’ expectations to meet. We use our work to define who we are. When I introduce myself the first thing I say after my name is my college major and for my parents it’s the careers. If what we do is such a strong part of who we are why is it not common for individuals with disabilities to have access to work? Outside of self-identification work is the cornerstone to self-sufficiency because of the financial stability it provides. It is important to provide opportunities to develop professional skills and gain experience working, as well as having work-based expectations for individuals with disabilities.

I have spent this past semester working with a few high school students with disabilities in their first work experience as volunteer greeters at the Reid Park Zoo. It is their job to interact with guests, answer questions, point someone in the right direction to get answers, know the rules of the zoo, and know where things are located. I have had the opportunity to watch them grow and learn to work because that is what is expected of them. Each student has mastered their tasks as Zoo Greeters and rarely need help from their job coaches over the past few months.A student wearing a Reid Park Zoo t-shirt and a face mask stands near an Exit sign at the Reid Park Zoo.

When talking to the students, I asked, “What do you want to do after you graduate?” Each student had very different answers. One student had to think about the question, but said he likes working at the zoo and would keep working there. Another student’s teacher told me he was looking at getting a paid job at the zoo working with the goats. A third student expressed wanting to go into graphic design and he told me he was going to classes to learn more about the graphic design field entails. During another week he excitedly told me he had something to show me, it was a picture of one of his drawings. In that moment I knew he could go on to create some fantastic graphic designs. Even though each one of these students has a different end goal, working at the zoo is allowing them to learn the interpersonal skills necessary for holding almost any job. Having this opportunity to work has given these students expectations for themselves and what they want to do with their lives.

Expectations give everyone a goal to achieve or a bar to meet and exceed. For individuals with disabilities, this bar is often not present or set very low. The existing societal expectation is that individuals with disabilities cannot work and therefore shouldn’t have employment opportunities. The expectation to get a job, get an education, or master a trade is important for everyone. Outside of family expectations, there is a lack of societal expectations as well. This leads to policies allowing individuals to be paid a subminimum wage. Shifting the stance from “this person could never work” to “what supports does this person need to pursue work” shifts the focus from an individual’s perceived deficits to their support needs. This past semester I have had the opportunity to see how effective job coaching can be on fostering success in a work environment. While also using simple tools like maps and graphics can be used as reminder. Taking a moment to help someone acknowledge their feelings allows them to have high quality work performance and overachieve in their assigned tasks. We all need support at different points in our lives and it is the same for individuals with disabilities looking to get into the work force.

A Webinar Series to Promote Real Work and Real Pay for People with Disabilities: Systems Change and Provider Transformation in Arizona

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Vanessa Zuber - A smiling white woman wearing glasses with brown, medium/short hair

By Vanessa Zuber
Sonoran UCEDD Trainee 2020-2021
Undergraduate Certificate in DD

I am excited to be collaborating and developing a 2021-webinar series for the Arizona Association of People Supporting Employment First (APSE) chapter as my community portfolio experience. APSE is the only national non-profit organization to focus and promote Employment First initiatives and facilitate equitable and inclusive work opportunities for people with disabilities (PWD). There are thirty-eight chapters all over the country! 

I have felt strongly connected to this organization throughout my years as an employment services provider, a sibling to my brother Nathan, whom is on the autism spectrum and now as an undergraduate student and Sonoran UCEDD trainee.

In planning for my community portfolio, I felt compelled to organize a set of webinars as a way to delve deeper into my learning journey, kick-start our chapter’s presence in Arizona, and to convey best practices and progressive ideas about competitive integrated employment (CIE) in Arizona. Yes, an ambitious project! APSE and nationwide chapters are advocating and participating in policy and legislative movements related to real work real pay for PWD, which has truly resonated with me. Currently, for example, is the Transformation to Competitive and Integrated Employment Act, which phases out the payment of subminimum wages under Section 14(c) of the Fair Labor Standards Act (FLSA) over a five-year period. This legislation would provide service providers, subminimum wage certificate holders, and other agencies with resources they may need to create competitive integrated employment (CIE) services and wraparound supports when phasing out subminimum wages.

In the state of Arizona, we still maintain center-based employment, and subminimum wage work programs and practices, creating a continual disconnect between our public school system and some state agency’s concerns on whether employment should be one of the expected outcomes for youth who have disabilities and whether PWD can be employed competitively in integrated work settings. If you ask me, Arizona continues to be hesitant and indecisive regarding CIE, hence the need for more education on strategies and supports, modeling best practices, collaboration, and additional statewide efforts for provider and systems transformation to progress towards equitable work opportunities for PWD.

Celebrating Autism Awareness Month: What my Experience Working with Families has Taught Me

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HaleyBy Haley Arnold 
Sonoran UCEDD Trainee 2020-2021
Undergraduate Certificate in DD

I’ve immensely enjoyed my experience as a behavior technician for United Cerebral Palsy of Southern Arizona (UCPSA). As a senior at the University of Arizona, I’ve been pursuing an Undergraduate Certificate in Developmental Disabilities through Sonoran UCEDD throughout the past year. Through this program, I was required to seek a community experience working with an organization in the field of disabilities. What was intended to be a short-term internship experience transformed into a job position for me when I was offered a position at UCPSA. Since becoming an employee, I’ve been able to work directly with families who have young children with Autism Spectrum Disorder (ASD). From my experiences of collaborating with practiced professionals at UCPSA as well as families of children with disabilities, I’ve gained an entirely different perspective on ASD and available treatment. 

I’m employed through the ASCEND program at UCPSA which is dedicated to providing interventions for children with developmental disabilities. The treatment that ASCEND provides is called Applied Behavioral Analysis (ABA) and is a research-based practice that can effectively aid children with ASD at different stages of development. The main goal of ABA is to recognize behaviors linked to different events and to then help either reinforce positive behaviors or help replace harmful behaviors with more beneficial ones. This program provides in-home treatment to children that includes and encourages the involvement of the parents as well as many different specialists from ASCEND directly. Treatment plans are designed by trained Board Certified Behavior Analysts (BCBA) who create behavior interventions based off the individual needs of the child. As a behavior technician, I’m trained directly by the BCBA who has gathered specific data relevant to my client. 

Starting as a Behavior Technician, I was first trained by UCPSA on many different relevant topics. I became CPR and First AID certified, received an overview on the basics of intervention strategies and terminology, as well as learned about the importance of confidentiality and ethical standards related to the position. I then decided to pursue additional training needed to become certified as a Registered Behavior Technician (RBT). This involves 40 hours of online training specific to ASD, interventions and strategies in ABA, and ethical considerations when working with this particular population that can often be mistreated. These modules helped convey to me the previous ways in which people with ASD were misunderstood and how many treatments were not fit for their needs and wants. For example, many repetitive behaviors that people with ASD participate in may be very comforting or helpful to them when navigating environments that are new or overwhelming to their senses. These behaviors are helpful to people with ASD and it would likely be harmful to try to target these behaviors for interventions. Understanding ASD as well as the needs and wants of a particular individual with autism and their families is critical when providing treatment of any kind. Centering the intervention around what works for the individual and changing based of their needs and progress is how ABA should be conducted and is a central facet of ASCEND.Logo for Ascend -- Autism Services Cultivating the Exceptional and Nurturing their Development -- Graphic shows a circle comprised of three puzzle pieces.

The person-centered nature of ABA and the way in which it is research-based and data-driven are my favorite aspects of the intervention. Through this experience, I’ve learned more about ASD and am looking forward to getting to know more families and their individual struggles and perspectives. In the future, I plan on becoming a Speech-Language Pathologist who would work with younger children who have communication difficulties. From this experience, I’ve learned to value and encourage the input of both the child and the family on the type and quality of services they receive. Being able to communicate directly with those receiving the services and hearing them express their needs to me and my co-workers has really reinforced how important self-advocacy is for those who have a disability or a child with a disability. These lessons are valuable to me and will continue to inform how I will be as a future clinician. Learning with and from these families directly has allowed me to understand the importance of strengthening your ties with the community and expressing and fighting for what you and your family requires. 

Early Dementia Screening for Adults with Intellectual Disabilities

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Ginger Mogel - Filipino American woman with long dark hair wearing a scarf on a bridge overlooking the river at nightBy Ginger Mogel 
Sonoran UCEDD Trainee 2019-2020
Undergraduate Certificate in DD

This semester I had the pleasure of working with Dr. Yumi Shirai at Artworks. Artworks is a program at the University of Arizona that focuses on mutual learning through creative and expressive arts. The artists at Artworks are all people with intellectual or developmental disabilities. The artists put on many art galleries and displays throughout campus. My task at Artworks was to use an early dementia screening tool on all of the artists. This was the plan, however, due to the presence and impact of the coronavirus (COVID-19), this plan was cut short and the future is uncertain. Before I was unable to return to Artworks, Dr. Shirai briefed me on the screening tool and its purpose. A mural created by artists of Artworks that represents the UArizona College of Nursing

A mural created by the artists of Artworks that represents the UArizona College of Nursing. 

The NTG-EDSD is the National Task Group on Intellectual Disabilities and Dementia Practices - Early Detection Screen for Dementia. This is a form used for early detection screening in adults with an intellectual disability who are suspected of showing signs of dementia. NTG-EDSD is used by family caregivers or staff to document any declines in functional performance or changes in health. This tool is not a diagnosis. It simply establishes a base line that can be used as a reference point to note significant changes and document information important for further assessment.

The tool should be conducted annually and by someone who is familiar with the person. Since I had only spent about a month visiting Artworks, I needed the help of the long-time staff who had been with the artists for years. The tool is six pages long and reviews topics from mental health, physical health, Activities of Daily Living (ADL), and chronic health conditions (View the tool in PDF format and for additional instructions). 

Rates of dementia are much higher in people with Down Syndrome. According to the National Down Syndrome Society, about 30% of people with Down Syndrome who are in their 50s have Alzheimer’s disease. For those in their 60s, about 50% have Alzheimer’s. The NTG recommends that people with Down syndrome receive this test starting at age 40 and then continue annually. Other people with IDD who are at risk are also recommended to receive this test starting at an earlier age.  

Early intervention is key when trying to manage the impact of such a debilitating disease. If you suspect yourself or someone you know with an intellectual disability to be showing signs of cognitive impairment, then I recommend that you look at the resources linked above. It can be easy to overlook certain cognitive changes as normal and sometimes even put the blame on the disability. However, you cannot be sure of what is normal signs of aging and what is not. Especially if you are only looking at it day to day. Serious changes are easier seen over the years.

It is best to know the signs and have a baseline in place to track the change over the years.

Although I did not get to finish this work, I looked forward to it and recognize its importance. As a family member of someone with an intellectual disability, it is always very relieving to find instruments such as this. The form only takes 15 to 60 minutes to complete. So again, I urge you to check out the PDFs above if you suspect yourself or someone you know to be showing early signs of dementia (especially the Down Syndrome(DS/DNS) population)!

A Person-Centered Approach to Health & Healing

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Rachel Foote - Portrait of smiling Caucasian woman sitting next to a lake. By Rachel Foote
Sonoran UCEDD Trainee 2019-2020
Undergraduate Certificate in DD

I am so thankful for my internship with an organization called Integrative Touch for Kids, as it has entirely changed my outlook on healthcare and wellness. I was anticipating this internship as an opportunity for me to give back my time and effort to the Tucson community, which has been my home for the past four years as I have been a student at the UA. I never expected that I would be the one reaping the benefits of Integrative medicine, and having my life changed by the folks of ITK and the patients and families that I encountered.

Integrative Touch for Kids (ITK) is a nonprofit organization based in Tucson, Arizona. The founder of ITK, Shay Beider, pioneered a new therapy known as Integrative Touch. Providing integrative healing therapies such as massage, reflexology, energy, equine, play and music therapies through their many programs, ITK is able to work in the hospital and in the community to change the way people view healthcare. ITK supports families whose children have any type of special health or medical need. This includes kids with cancers, genetic conditions, autism, cerebral palsy, traumatic stress, and other serious health issues. ITK engages communities in support of families struggling with special medical needs, improving the quality of life for all.

Adult Caucasian woman interacting with a young Caucasian boy in a medical setting.

As an intern for ITK, I was given the ability to work in the hospital and at the ITK office. ITK is based out of the University Medical Center Tucson-Banner, in the Diamond Children’s Tower. I served as the program evaluator, which entailed collecting consent forms from patients and families; recording all interactions made between ITK team members and patients, families, and Banner staff; and measuring pre- and post- session outcomes after each treatment. In the hospital, I was able to work with families of all different demographic and socioeconomic backgrounds and a variety of healthcare workers. As an intern in the ITK office, my tasks looked a little bit different, and I spent more time with the ITK volunteers in Tucson. I was invited to be a part of the launching for ITK’s first ever podcast called Conversations On Healing. The vision behind Conversations On Healing, is to hear stories and opinions from healers and healthcare professionals around the nation. ITK wants to share stories from experienced practitioners and explore the unknown in the world of healing. I worked side-by-side with executive director, Shay, as we invited bright and creative individuals from all over the country, set up interview dates, created the audio/graphics and fully prep the series to launch in the Spring of 2020. This has definitely brought about a more creative side for me!

ITK’s mission is to change the way people experience health and healing through a Whole Child, Whole Family, Whole Community wellness model. The goal of each session for ITK is to focus on the individual and their needs, also known as a person-centered approach. This is such a refreshing view on healthcare, as many times a holistic approach is not always prioritized. As I have viewed many sessions with ITK in the hospital and in the community, I noticed that although these patients may have family members in the rooms with them, their voices are heard over everyone else’s. It is so crucial to recognize, as a future healthcare worker myself, the importance of taking time to ask the patient questions (when appropriate), before looking to the parent or caregiver. This instills confidence in the patient while also allowing them to practice self-advocacy. It is so important to empower families and children, and let them know that they are doing the best they can!

To learn more about ITK, visit their website at https://www.integrativetouch.org

The Sonoran UCEDD does not endorse any particular service providers. 

My Experience and Education Assisting With Equine Therapy

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Jordan Gotwalt - smiling Caucasian woman with long light brown hair sitting on the back of an old tow truckBy Jordan Mackenzie Gotwalt
Sonoran UCEDD Trainee 2019-2020
Undergraduate Certificate in DD

Throughout this past semester, I had the amazing opportunity to volunteer at Angels in Autism LLC, an early intervention center serving community members with developmental disabilities in Tucson. This organization is dedicated to providing behavioral and cognitive therapies to individuals with disabilities, primarily those with autism, in order to encourage the development of positive social skills and promote self-determination. Angels in Autism has partnered with Equine Therapy Arizona, Inc. to bring the perfect individualized blend of Equine Therapy, Applied Behavior Analysis (ABA), and Discrete Trail Teaching/Training (DTT) for children aged 1 year old to young adults. They provide lessons in the learning center, riding lessons, and various camps for children of all ages to come and explore the equine world.

three kids riding horses with support during therapy session

During my experience, I had the opportunity to help in the Learning Center and to be a sidewalker during the Equine Therapy lessons. In the Learning Center, I worked with staff and students to advance their school skills and other behavioral tactics such as learning to express emotions. As a sidewalker, I worked with staff during equine therapy lessons to help guide students during activities and ensure their safety throughout the lesson. While the Learning Center was a great experience, the equine lessons were the highlight of my day, every day. Angels in Autism has many different horses, each with a different personality. While each individual has their own favorite horse, everyone has the chance to work with a variety of horses, no matter what skill level they are. From simple brushing to groundwork to riding, all individuals have a chance to connect with their horse. This provides them the opportunity to practice building positive, caring relationships. It was amazing to see the students’ light up when they were with their horses and be witness to their progress throughout their sessions.

There were two people that truly exposed me to the impact that both horses and other individuals can have on each other. I was working with a young boy and girl who have a lesson together. Throughout their sessions, they were both working on decision making skills, the importance of communicating clearly, and giving specific directions. Their first task was to work on direction-giving and forming solutions. They were each given a route to take in the corral, had to explain to each other what their route was, and come up with a solution on how they could each take their route without running into each other.

young boy petting a horse's faceTheir next session revealed the progress that they made on communicating clearly. They were both blindfolded, handed an object, and had to describe it to the other person. Afterwards, they had to decide if they held the same object in their hand. They also needed to perform this while next to a horse, showing the trust that they have in their horse and in the staff members. A big part of this exercise was teaching them how to control their anxiety as well, since they were blindfolded.

For the rest of the session, they performed groundwork, walking the horses around a path at the ranch. This part of the session was to teach them to work on their breathing, controlling their anxiety, and increase their confidence levels. I watched as these two students became more self-determined and powerful after planning how they would deal with obstacles and succeed once they got through them. Then I noticed a change in myself, about how going through these sessions with the children also encouraged me to breathe deeper, increase my confidence, and decrease any anxiety that I have. Anyone incorporated into the lesson, including the students, staff, and volunteers, learn something new about themselves and how they can make themselves into a more confident individual.

This mix of equine therapy and ABA has shown me a new pathway into early intervention and the improvement that all children can make, even in just one session. The community that Angels in Autism provides is one that is open, welcoming, and is always there when I need it. They work together with families to increase self-determination, create bonds, and develop connections. I have learned so much while being a part of this community, and I hope to continue to grow through my involvement with Angels in Autism, LLC.

Learn more about Angels in Autism, LLC by clicking here: http://angelsinautismllc.com/

The Sonoran UCEDD does not endorse any particular service providers. 

Sonoran UCEDD Represents AZ at National Brain Injury Awareness Day

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By Austin Duncan, MPA, ABD
Sonoran UCEDD Trainee: 2014 Cohort, 2017-2018 Diversity Fellow

Like many disabled people—especially young disabled people—I have frequently felt isolated and ignored since becoming disabled by a severe Traumatic Brain Injury (TBI) 17 years ago.  Almost no one understands what TBI is, much less what it can mean for survivors—and this includes my professors, colleagues, and even friends here at UArizona. The Sonoran UCEDD has been a rare exception, and I’ve worked with them as both a trainee and now a student worker for most of my time in graduate school – nearly seven years!

So, it was with great anticipation that I accepted when Sonoran UCEDD Training Director Jacy Farkas asked me to attend the National Brain Injury Awareness Day in Washington D.C. on March 4 as part of their collaboration with the Arizona Governor’s Council on Spinal and Head Injuries on person-centered practices.

My experience did not disappoint! 

US Capitol BuidlingI was lucky to participate in such an event when I did, given how we were all asked to begin “social distancing” soon after I returned to Arizona. In going to two all-day sessions on “the Hill” and talking to policymakers, professionals, and survivors there, I found gathered in one place hundreds of people from around the entire country that understood the effects of TBIs.  More importantly, given TBI’s highly diversified and specific-to-the-individual nature, the people I met were willing to listen when I talked about my own disability, and the accommodations and understanding I needed to function optimally with it.

Thanks to the Sonoran UCEDD, I was able to stay at a very nice apartment sized AirBnB that was only a few blocks away from the U.S. Capitol building. It was near where all the action took place and the trendy Eastern Market shopping area, with its fantastic and (relatively) low cost food. So my time spent “working” for the Sonoran UCEDD in D.C. ended up being a wonderful experience as well as a great opportunity for professional development.

My first day in D.C., April 3, I got up early and headed out to the Hubert Humphreys building, where the U.S. Department of Health and Human Services (HHS) is housed and the National “TBI Stakeholder Day” was held. 

The day’s events consisted of an address from HHS Assistant Secretary and Director of the Administration for Community Living (ACL)’s Lance Robertson, and several panel presentations about TBI-related issues that reaffirmed my knowledge in the importance of understanding TBI as a disability that affects many more Americans than is commonly understood. 

One of the panels spoke about how more than 50% of all individuals experiencing homelessness in the U.S. are TBI survivors. Another discussed how TBI survivors make up a significant portion of repeat offenders in U.S. prisons, as well. Although I do not have time to go into it here, both points prove what I found in my research, showing how TBI as a disability is primarily social, not simply the direct result of a head injury.

Eric Washington and Austin Duncan, two men smiling and standing together At the event, I also got a chance to meet up with some members of the National NCAPPS Brain Injury Learning Collaborative, like Eric Washington, former linebacker for the University of Kansas.  He himself had been homeless in the past, as he discussed in his panel.  It was not until he learned how his football-related concussions were TBIs that he was able to see how they resulted in depression, social problems, school troubles, unemployment, and ultimately homelessness. Once he learned this, he was able to connect with representatives from ACL who helped him regain a productive life and start a family.  His new mission is to work with them to raise awareness about the seriousness of concussion TBI in the country.

For the second day, National Brain Injury Awareness Day, we went to one of the U.S. House of Representatives’ Office Buildings.  First there was a Brain Injury Awareness Fair, where I met with about 30 different vendors from around the country.  They each had a small table presenting their rehab services, work with survivors and vets, and amazing new technologies for brain injury diagnosis outside of hospital settings.  Although I have been doing research on Brain Injury for years, I was completely unaware of some of what they told me.  After that, we all went into one of the official Congressional meeting rooms for the Brain Injury Congressional Briefing. 

Rep. Pascrell, Jr speaking at the podium during the Congressional Brain Injury Task ForceThe two US representatives who head the Congressional Brain Injury Task Force sponsored the day’s activities, Representatives Bill Pascrell Jr. (D) of New Jersey and Don Bacon (R) of Nebraska both gave talks, before rushing to Congressional hearings on COVID-19. After the briefing, we had a reception in the same room, and Rep. Pascrell himself came back in to tell us that he had just been voting on and helping to secure an $8.3 billion bill to combat the spread of the coronavirus. 

Afterwards, I got to meet with friends from my time living in D.C. after my Peace Corps service in 2011-2012.  I woke up late the next morning, sad to be leaving but glad to be coming back to Arizona. Here I can and will continue  to spread the word about TBI and other neurological and intellectual disabilities through my writing and presentations from my doctoral dissertation in medical anthropology, and my work as a graduate research assistant to Dr. Wendy Parent-Johnson and the Sonoran UCEDD.

The Sonoran UCEDD, alongside the Governor’s Council on Spinal and Head Injuries, Brain Injury Alliance of Arizona, RSA Vocational Rehabilitation, and community members with lived experience serve on the Arizona team for the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) Brain Injury Learning Collaborative. Statewide teams from around the country meet online over the course of 18 months to discuss plans to raise awareness and improve policies and processes for serving brain injury survivors in their states. The Sonoran UCEDD is represented by Austin Duncan and staff members, Jacy Farkas and Melissa Kushner.

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Increasing Mental Health Awareness & Addressing Stigma

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by Victor “Blue” Paat
Sonoran UCEDD Trainee 2018-2019
Undergraduate Certificate in DD; Diversity Fellow
#MentalHealthAwarenessMonth

Blue Paat, young Filippino man on a bridge in a parkI had the privilege of working with the National Alliance on Mental Illness Southern Arizona (NAMISA) for my Diversity Fellowship. I worked with the lead presenters of the “Ending the Silence” outreach program, meant to educate youth (middle and high school aged children) and organizations around Tucson about mental health and illness to end the stigma concerning these topics. The National Alliance on Mental Illness (NAMI) is an organization that works to improve the lives of those being affected by mental illness. NAMI has local organizations to better serve communities around the United States, and provide services based on their four main principles: to educate the population of support programs and information; to advocate politically for mental illnesses and positive mental health; to listen to the responses of the population to uphold current issues or distribute urgent information; and to lead the initiative of understanding the importance of mental health to fight stigma and promote understanding of mental illness.

NAMISA provides helplines and resources in pamphlets, bulletins, and on their website. They have a dedicated crisis lines to provide the callers with immediate information and resources when experiencing concerns over mental health. NAMISA also runs events and programs that provide current services, care, and supports for those with mental illness.

Ending the Silence program logoThe “Ending the Silence” program was designed as an outreach program to different schools and organizations to provide information on mental health and illness in an effort to remove stigma around these topics. This program works to explain the historical, social, and cultural constructs of how mental illness affects the lives of people and to improve societal understanding of mental illness. Specifically, they discuss how certain ideas and misconceptions are incorrect, and what information the audience can trust as a legitimate source of information.

The 50-minute, research-based (Wahl, 2018) program consists of two presenters – a lead-presenter, who talks to the audience about mental health and illness, and a young adult presenter, who is  living in recovery with a diagnosable mental health condition. Audiences listen to the lead-presenter and are given facts, then listen to the young presenter tell their story of what they felt and how they overcame obstacles. A frequent question that is asked by audiences highlights the distinction of developmental disability and mental illness. This allows for a discussion that influences how audiences may perceive mental health, mental illness, and developmental disabilities. Previous research has shown that the program improved attitudes towards mental health/illness and knowledge of available resources after receiving the information (Wahl, 2018).

Lead presenters are instructors that are trained to deliver the information about mental illness; but through improvements in delivery, the audience can more fully retain that information (Anderson & Krathwohl, 2001). Considering the bulk of information is given by the lead presenter, it is important to see if how a lead presenter gives information to an audience is different across presentations. For example, an “Ending the Silence” presentation may provide resources and information that has been shown to cause change in attitude and knowledge, but these outcomes may vary depending on the training and charisma of the lead presenter.

To examine if there is a difference in how the presentations are given, Dr. Jared Schultz (Sonoran UCEDD Research Director) and I created an evaluative tool to observe how an instructor engages the audience in the information. Engagement by the instructor may encourage or discourage remembering helpful information, and in turn describe how the social constructs of disability and mental illness may improve if more information is remembered. The evaluative tool used to measure the presentations, specifically, to score the quality of the questions by the lead presenter through effective levels of learning (Bloom 1956; Anderson & Krathwohl 2001). Using Bloom’s Taxonomy and other studies, we determine if a question is weak or strong in engaging the audience’s cognition, and higher level of thinking. For example, questions that want the audience to remember simple facts or numbers would be considered weak question. Questions that require the audience to apply information to scenarios or provide opportunities to apply the information they have learned would be considered strong questions.

My experience with NAMISA was truly rewarding. I helped reach out to communities and organizations that benefited from the “Ending the Silence” presentations, and I was able to see how the team within NAMISA worked together to achieve their four principles. They were all very kind in offering services and have taught me a lot of the policies and importance of providing information. I appreciated how many resources they had available, and how high they value their programs and organization. It was a pleasure to work with them and their initiative to end the stigma of mental health, and I look forward to utilizing the evaluative tool we have created with the community as a whole in ending the stigma attached to mental health.

National Alliance on Mental Illness Southern Arizona logoTo learn more about NAMISA and their programs, or to set up an "Ending the Silence" presentation, please visit their website at http://www.namisa.org or call (520) 622-5582.

References

Anderson, L. W., & Krathwohl, D. (2001). A Taxonomy for Learning, Teaching, and Assessing: A Revision of Blooms Taxonomy of Educational Objectives. Longman: New York.

Bloom, BS (1956). Taxonomy of educational objectives. Volume 1: Cognitive Domain. New York: McKay

Wahl, O., Rothman, J., Brister, T., Corrie, T. (2018). Changing student attitudes about mental health conditions: NAMI Ending the Silence. American Psychological Association.

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My Son-Inspired Research

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Dr. Rebecca Hartzell
ArizonaLEND Trainee
Guest blog for #AutismAcceptance Month

Rebecca and her son huggingI came to research as a mom. I would use my three hours of “shopping time” on Saturdays to sit in a café and read everything I could find about Autism. One of my triplet sons was diagnosed just a few months before, and I felt woefully unprepared to be his mother. He deserved someone that would help him to be the very best version of him, and I knew very little about autism. I would later enroll in a Master’s program at the University of Arizona in Special Education. As part of that program, I took every class available on autism – from UA, ASU, and NAU. It was a time of great learning, and I wanted all the information I could find. My learning would eventually lead me to research.

While completing my final semester of my Master’s, I was student teaching at the Early Intervention preschool at my triplets’ school. This allowed me to check in on my son during lunch. He was always sitting by himself in the lunchroom. His brothers would be sitting at the lunch table talking to peers, and my son with autism was always seated at the very end of the table, next to the trash can. I made it a habit to watch him every day at lunch. In the six weeks I checked on him, he was always seated apart from his class, next to the trash can, by himself.

I began to get furious. He had minutes on his IEP for social skills instruction, but in the six weeks that I watched him, I never once saw him interact with a peer. Surely the social skills instruction he was given would generalize to the lunchroom – one of the few opportunities he had during the day to socialize? I lamented to my Master’s advisor that something needed to change – they should teach him in the environment in which he needed to be social. My advisor wisely explained, “They won’t do that unless you prove it works.”

I began my first study three months later. A doctoral student and I went into a lunchroom, and began prompting two children with Autism Spectrum Disorder (ASD) and one child with Down Syndrome to socialize with their peers. We taught them lessons a few minutes before lunch on the skill we felt they needed to improve, and then we verbally prompted them to talk with their peers once every minute throughout lunch. This increased their social engagement greatly, and I was elated to see these skills transferred to the recess setting, without the prompting provided.

Since that time, we have conducted the same basic intervention (with a few tweaks each time) with students with Emotional Behavioral Disorder (EBD), a student with selective mutism, students with EBD and ASD at the middle school level, and three students with ASD at the high school level. Finally, we investigated the need of the social skills lessons with four students with ASD, and found that the lessons did not affect the social engagement with students with ASD, that only the prompting had an effect on their social engagement. Additionally, at the middle and high school level, we initiated the prompting procedure with peer mediators rather than the adults. The results have consistently improved the social engagement of students with ASD and EBD at the elementary, middle and high school level.

I have many more research studies I hope to conduct. There is so much more I want to know about social skills and children with autism. Knowing that what I learn through research affects children like my son, motivates me to continue investigating the best ways to teach social behavior in children with autism. And, as I reflect on my own role as a researcher, I find myself feeling immense gratitude for the researchers that have come before me that discovered what we know about autism today, because it has helped me to be a better mother to my son.

Rebecca Hartzell, headshot of honey blonde Caucasian woman in front of green foliage in a blue blazerDr. Rebecca Hartzell is a board certified behavior analyst and is an Assistant Professor of Practice in the Department of Disability and Psychoeducational Studies at the University of Arizona. She is a 2018-2019 Trainee at the ArizonaLEND (Leadership Education in Neurodevelopmental and Related Disabilities) at the University of Arizona, which is a leadership training program that prepares the next generation of policy makers, faculty, clinicians and researchers to lead the maternal and child health workforce. For more information about the ArizonaLEND, please visit their website: https://arizonalend.peds.arizona.edu

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On Living the Social Life of TBI

Submitted by Sonoran UCEDD on

by Austin Duncan, MPA, ABD
Sonoran UCEDD Trainee, Diversity Fellow

Austin Duncan (headshot)I am a UA PhD candidate in anthropology and Sonoran UCEDD (SUCEDD) Diversity Fellow.  My research focuses on the social aspects of Traumatic Brain Injury (TBI), a common yet largely misunderstood injury sustained by nearly 2.8 million Americans every year, according to the latest figures from the CDC.  It is also one of the largest causes of death and permanent disability for those under 65 in the contemporary US, even though many TBI survivors show little to no outward signs of they impairments. My dissertation on "The Social Life of TBI" teases out the social impact and construction of these injuries, as survivors and those around them live the rest of their lives affected by them.

September 21, 2018 National Concussion Awareness Day, Brain Injury Alliance ArizonaFor my fellowship, I completed a project entitled "Living the Social Life of TBI: On the Value of Embodied Research in the Social Sciences." For it, I observed and recorded the interactions of my own diverse impairments and identity as a severe TBI survivor with my work and interactions with other survivors.  I first noted each of the various impairments that comprise my disability, including:

  • physical impairments like balance and coordination problems,
  • emotional issues like anxiety and unpredictable mood swings,
  • cognitive factors like memory and attention deficits, and
  • interpersonal issues related to each of these.

Every day, I personally experienced and recorded how these impairments interacted with my work in the field.  I noted these interactions on field notes covering narrative and semi-structured interviews with survivors, their friends and families, and local policymakers, weekly TBI Support Groups, and at formal and informal community events. I also kept a field journal where I reflected on the role my injury plays in my development as an anthropologist.  Additionally, during this time, my project team at SUCEDD conducted monthly conference calls, during which I inform the team of my progress and help introduce them to social angles on TBI that they could use in their own projects in Arizona.

As part of the fellowship, I participated in the Association of University Centers on Disabilities (AUCD) learning community for Diversity Fellows across the UCEDD network, and was an active member of the learning community’s policy sub-group.  I tried to bring in my background as a Master of Public Administration (MPA) and my work with non-profit health organizations to discuss various disability policy-related issues.  My specific interests for this sector are in the intersection of disability and public health policy, as well as TBI survivors’ workplace and employment concerns (whether or not they identify as disabled and make use of ADA-guaranteed accommodations).

Ultimately, I hope to use my fellowship experience along with my dissertation to begin to spread awareness of the reality of TBI and all brain injuries on individuals, families, and communities.  I am especially targeting it at local policymakers, as my research has found that they have enormous potential to mitigate the injury's most harmful social effects on survivors and those around them, including on the extremely high correlation between TBI and homelessness now being discovered in homeless populations throughout major US cities.

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