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.

To set up an RSS feed and subscribe to the CACTI, click on the universal rss feed icon icon at the bottom of the page. By subscribing to this feed, you receive updates when a new post publishes.

Early Dementia Screening for Adults with Intellectual Disabilities

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

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

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

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.

Tags: 

Increasing Mental Health Awareness & Addressing Stigma

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.

Tags: 

My Son-Inspired Research

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

Tags: 

On Living the Social Life of TBI

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.

Tags: 

Advocacy & Accessibility: A Trainee's Reflections of the 2017 AUCD Conference

by Clare Emmert
Sonoran UCEDD Trainee, Undergraduate Certificate in DD

trainee, Clare standing in front of poster I had the opportunity to attend the 2017 Association for University Centers on Disabilities (AUCD) Conference in Washington, D.C. from November 5-8. Attending the AUCD conference was an incredible experience that gave me a new sense of confidence and left me even more committed to serving individuals with disabilities. Leading up to the conference, it was difficult to focus on anything other than preparing for my first poster presentation. I knew that I would be entering a space filled with leaders in the disability field, each equipped with years of professional and research experience that I was just beginning to build. However, as soon as I began sharing my own work on Person-centered Planning for foster youth with IDD, my feelings of nervousness were replaced with excitement. One after another, conference attendees took the time to stop and listen to the information I was sharing, genuinely engaged and interested in my work with the Sonoran UCEDD. Perhaps the most rewarding aspect of the AUCD conference was this opportunity to connect with others face to face, exchanging stories and building rich conversation around the importance of Person-centered Planning and other tools that could improve the lived disability experience. Throughout the remainder of the weekend, I found myself continually inspired by other attendees, eager to continue these conversations around their work, values, and ideas for change. I still think back to the community that was cultivated by the AUCD 2017 conference, and am so grateful to have been a small part of that. As I reflect on my conference experience, one session helped to re-shape my beliefs around self-advocacy and the important role information accessibility plays in advocacy, independence and inclusion of people with intellectual disabilities.

The concurrent session, “Accessibility is Much More than a Checkbox: Making Sure People with Intellectual Disabilities Can Truly Access Resources and Programs Independently,” addressed the importance of people with intellectual disabilities (ID) being able to access material on their own by highlighting AUCD’s “Tuesdays with Liz: Disability Policy for All,” the Autistic Self Advocacy Network (ASAN)’s Medicaid toolkit, and the Human Development Institute (HDI)’s KentuckyWorks website. The session, led by long-time disability advocate, Liz Weintraub, and ASAN and HDI staff, demonstrated that accessibility also includes respectfully presenting information using multiple tools, learning devices, audience reviews, and clean formats. In sharing these resources and teaching others how to ensure information is accessible, the panel promoted inclusion of people with ID in multiple contexts.

Although the presentation content focused on designing accessible materials like websites and brochures, the speakers assured attendees that the strategies could apply to anyone who interacts with an individual with ID. For example, if one is sending an email or facilitating a meeting with a person with ID, the guidelines for ensuring the content is presented in an accessible format are equally applicable and important. For individuals with ID, it can be incredibly difficult to sift through lengthy documents ripe with academic language and absent of visuals or other supports. The session leaders reminded the audience that one should never simply omit information in order to make the process of creating an accessible format more feasible. While the accessible format can be lengthy and time-consuming to create, they encouraged attendees to think about information accessibility early on, incorporating funding for the process into their grants. All people should have equal access to information; it is crucial that individuals with ID have access to the same information that individuals without disabilities do, especially when it pertains to policies that affect their quality of life.

Unfortunately, it is not common in our culture to see individuals with intellectual disabilities in leadership positions, and often the policies that affect individuals with intellectual disabilities are discussed without involving the input of a self-advocate. Perhaps if our social and cultural constructs around intellectual disability were less stigmatized and more rooted in the value of this diverse population, organizations and leaders would already ensure that the materials they produce are universally designed.

AUCD 2017 Lift Your Voice! (conference logo)Prior to this session, I viewed self-advocacy as something an individual is responsible for pursuing themselves. That is, if someone does not pursue the role of self-advocate, it must be because they simply don’t want to be. However, I now realize that this frame of mind is incomplete. While self-advocacy is a personal choice that cannot be forced upon someone, I had never considered that not everyone has equal access to becoming a self-advocate. I appreciated the way this session shed light on the environmental barriers that prevent individuals with intellectual disabilities from becoming self-advocates, and feel that our communities can take on more responsibilities to ensure the information they disseminate is accessible to diverse populations. Individuals and organizations who prioritize information accessibility show that they value the input of individuals with intellectual disabilities, ultimately increasing opportunities for individuals with disabilities to lift their voices.

Tags: 

iCan Bike Camp through SANDS

October is National Down Syndrome Awareness Month.
Sonoran UCEDD interdisciplinary trainee, CJ Bruske, shares his volunteer experience with iCan Bike Camp put on by iCan Shine, Inc. and sponsored by the Southern Arizona Network for Down Syndrome (SANDS) as part of his community reflections portfolio for our undergraduate certificate in developmental disabilities.
Learn  more about CJ and our other trainees: Meet Our Trainees

by Christopher "CJ" Bruske
Sonoran UCEDD Trainee, 

Undergraduate Certificate in DD

I decided to get started on the portfolio aspect of the certificate pretty quickly as I found myself in Tucson for the summer. I had somewhat ironically just gotten back from mountain biking with my roommate, when I received an email about the iCan Bike Camp. It felt like fate as I had just gotten back from enjoying one of my favorite activities, and I couldn’t pass up the opportunity to help children with Down syndrome also experience one of the great joys in life.

After orientation, I still felt very unprepared in assisting the riders to successfully control their bikes. I remembered my own experience learning to ride a bike and the struggle of falling down over, over, and over again. When I first arrived to the first of five days, I was met with eager families that had already arrived thirty minutes early. The apprehension I had about bikes was relieved when I observed the rollers on the back on the bike and the way they prevented the kids from falling off while learning. I was introduced to my rider, Bentley, who immediately wanted to hop on the bike and could not have cared less about who was going to help him. I luckily had worn my athletic shoes, as I immediately learned how hard it is to run next to a bike when your rider is as eager as Bentley was. Quickly, his bike was called into the “shop” to get fixed up (his bike’s roller was replaced with a more narrow one which was not revealed to the riders to prevent any apprehension about less balance). In the meantime, Bentley got a water break and danced to his favorite song that he requested to be played every day at least five times.

All of the riders did not have such immediate success as Bentley did. Some of them were on their bikes at least by the end of the first day with their feet on the pedals, but one rider specifically was unable to get their feet on the pedals until the third day without screaming. Every family member that was there supported each rider; with each lap around the warehouse, every rider was met with cheers and words of encouragement. Even though every child was on a different level, there was a sense that everyone was working towards the same goal, which created the positive environment necessary for every rider to be successful. 

As the week progressed, Bentley was able to ride his own bike that had been brought from home, which he had been eagerly awaiting. The only issue was that the day prior, he had his first serious spill. He was on a regular bike with just a handle bar for me to assist while he rode and had taken a turn too confidently. As I had been taught, I started to compliment how awesome of a fall it was, making sure he didn’t sense that I was secretly freaking out inside. He got right back on the bike, but I could tell he wasn’t the same. Because of this, the last day was the most difficult one, as he constantly would call for me to hold onto him. Luckily with determination and some tough love from his mother, we worked through it and by the end of the day, he had to be pulled off of the bike to go home.

This camp was valuable to the riders because each one of them left with a greater sense of self-confidence and understanding of their abilities. The radiant smiles on their faces when a medal was bestowed upon them showed just how much the camp had meant to them. For those with disabilities, especially in their younger years, it is crucial that they believe they are able to participate in what other kids their age do. Riding a bike is a milestone in every child’s life, and iCan Bike ensured that all of the riders were able to as well. The amount of tears that were shed by parents watching their children succeed at riding a bike also proved how impactful the week was for the families. For Bentley, he was able to finally ride around with his siblings and not feel left out anymore. His mother no longer had to tell him that he had to use his training wheels and he took a great step in gaining his own independence.

CJ and Bentley smilingIt was an amazing week in that I feel like so much was accomplished in just five one hour and a half days. I have a new friend in Bentley, and a new understanding of the challenges that those who have disabilities face while growing up. As the week went on, I know we had made a connection, as he trusted me enough to bike without me constantly behind him. I felt blessed to share the moment with his family for the week, and even was offered to come over and ride bikes at their home. I also learned that his father is a pediatric doctor that specializes in kids with disabilities, and that I was welcome to talk to him about his career path whenever I wanted.

I also was able to make it into the Tucson news and be featured in pictures with Bentley. His outgoing nature immediately stole the show and the best of him came out when the camera was on him.

Check out more photos of Bentley, me and other iCan Bike Camp participants: http://tucson.com/news/local/photos-i-can-bike-camp-teaches-kids-and-adults-to/collection_8c2fa8be-52f1-11e7-864c-832c78f43e8e.html#1

Tags: 

SibSpot - A Sibling's Perspective on Aging

Marianne and Joey at a tableby Marianne Marts
CAC Member

Thanks to the Sonoran UCEDD for sponsoring me to attend the National Task Group on Intellectual Disabilities and Dementia Practices train the trainer workshop on Fundamentals of Intellectual Disability and Dementia.  As a sibling and guardian to my oldest brother, Joey, who is 57 and diagnosed with Down Syndrome, I plan to pass along the wealth of information and personal experience by collaborating with the UCEDD for trainings across the state to inform families and professionals working with aging individuals with ID.  I have been fortunate already to train my brother's current staff with some tidbits learned, and it is proving to be beneficial for the staff and residents. Thank you Sonoran UCEDD for taking the aging issue seriously and doing something about it. 

Being a sibling caregiver can carry many roles - one which is called the sandwich generation. Where we caregive for our sibling at the same time we begin caring for our aging parents.  You will find planning ahead and surrounding yourself with support will help you have a healthier transition.  The old adage that you have to take care of yourself in order to take care of others is true.  Reach out and find resources...don't take no as an answer.  Find someone who will help you keep others accountable, as well as help you relax.  

If you are looking for support in aging and DD, a great place to start is our local Alzheimer's Association Desert Chapter, which has a great program for caregivers called CarePro to help teach and support family members.  Another great resource if you are a sibling is Sibnet or go to the Sibnet Facebook group and ask to join (it is a closed group for privacy reasons).  Finally, your local Area Council on Aging (Pima Council on Aging in Tucson) is a huge resource as well.  Don't be afraid to ask for help and keep asking until you find what you need.  Persistance is key.  

Joey is an integral part of my life.  He has taught me more than any teacher, training, agency or program ever will.  Even when it is hard to handle the truth and the future, his smile and hugs always brighten the day! Follow our facebook page - Joey's Ups with Downs - as we share Joey's life and my own as a co-guardian to show the importance of family/sib roles in the life of a person with a disability.

Tags: 

Pages

Subscribe to The CACTI <br> (Community Advisory Council & Trainee Infoshare)