Oct/Nov 2022 It Takes a Village

Closing The Gap Solutions e-Magazine, Oct/Nov 2022 - It Takes a Village By Barb Kelii, Rachell Johnson, Kami Smith and Erika Chapman

leadership, policy & implementation

It Takes a Village

Does success with assistive technology (AT) happen in isola- tion? No! An old adage tells us “it takes a village to raise a child” speaks of everyone in the community having an essential role in raising a child. The same principle holds true regarding the suc- cessful use and integration of AT/AAC for every user - no matter their age! It takes a village to nurture independent users of AT who can advocate for themselves and have the support of fam-

ily in a community environment that champions their use of AT as functioning autonomous members of the community. Do you sometimes feel like the “lone ranger” in AT or AAC practice in your district or clinical team? Do you wish you had more buy-in from AT/AAC users, their families, the IEP and or clinical team? In this article we will discuss how we can apply this principle of “It takes a Village” to strategic planning for build-

BARB KELII, MA OTR/L, ATP Barb has been a registered and licensed Occupational Therapist for 20 years. She started specializing in Assistive Technology over 10 years ago, and holds the RESNA ATP certification. She has worked with children and adults in home-based settings as well as outpatient and private practice. Barb is an advocate for AT and works to educate others on the benefits of starting use as early as possible (but it’s never too late to start!). She has presented Nationally on several AT and AAC topics including evaluation and DIY tools. Barb is an independent contractor for OT and AT services and can be reached at tctechgal@gmail.com. RACHELL JOHNSON, M.C.D., CCC-SLP, ATP Rachell is the program manager for the South Carolina Assistive Technology Program with the Center for Disability Resources at UofSC School of Medicine. She is an SLP specializing in eye gaze evaluations and treatment. Rachell previously served as the AT Team Lead for Florence One Schools and as the Assistive Technology Program Manager for the DC/MD/VA Chapter of the ALS Association. She helped to open one of the nation's first free standing AT clinics for those with ALS. She has published 2 articles for Closing the Gap Magazine. She has presented at over 7 national conferences as well as a host of online AAC and AT webinars. KAMI SMITH, Kami graduated from the Medical University of SC with a Bachelors in PT in 1987 and a doctorate in PT from NOVA Southeastern in 2013. She possesses Assistive Technology Professional and Seating and Mobility Specialist certifications through RESNA. She has worked in multiple settings since 1987, but has primarily worked for Florence One Schools for the past 31 years. She is one of the district’s Assistive Technology (AT) Team Leaders and assists with conducting consultations and evaluations for AT. Kami is a member of the F1S CITES Team which is part of the national CITES Framework to create inclusive technology ecosystems within school districts. Contact: kjsmith@fsd1.org ERIKA CHAPMAN, Erika lives in Florence, SC and works for Florence One Schools as their Parent Liaison for Programs for Exceptional Children. She is a wife and mom to four children and her inspiration for working with families of students with exceptional needs is her own 13 year old daughter, Suubi. She loves working with families and helping them advocate for their own students. In her free time she loves to read, learn more about AAC and look for shark's teeth on the beach! Contact: echapman@fsd1.org

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ing capacity in AT/AAC use. There are four key factors in prevent- ing AT abandonment and encouraging AT success: • the user • the family • the team: school team, clinical team, and/or personal care team • the community Every member in each of those areas must remember to“PIN.” PIN is our acronym for perception, involvement, and needs. In this article we will refer to “AT” as a general term that en- compasses all assistive technology tools for communication (AAC), mobility devices, low vision, hearing, academic areas (reading, math, written expression), and recreation. By doing this, you will be able to think about your own clients/students/ family members and reflect on the information personally.

they can be connected.

Building Capacity with The AT User: • Involve the AT user in each step of the AT process from ob- taining AT to programming and maintenance • Arrange for the AT user to be exposed to a variety of choic- es in AT, this includes software and hardware options • Always consider the user’s needs and wants. • During trials of equipment, help the user to compare and contrast by making a personalized comparison chart with their goals listed in the chart. • Provide AT education and awareness • Teach the AT user to advocate for themselves; examples in- clude the Communication Bill of Rights and having consis- tent access to their AT at all times across all environments. • Empower the AT user by creating AT passports that explain the AT user’s technology to new people they may interact with. • Expose the AT user to others AT users through camps, sup- port groups, and social media. Some examples of AT users in the media are: º Roll with Cole and Charisma

AT USER

AT User Perception: AT evaluators are the people with the responsibility of con- necting potential AT users with AT. How the AT evaluator per- ceives the AT user affects the outcome of the evaluation, and it can also affect how the user feels about their own potential to use AT. AT can be overlooked because of the evaluator’s per- spective and/or preference. Certain bias, stigmas, and general myths about AT can cause the AT user to be overlooked for cer- tain technologies and “not ready” for next steps due to invented prerequisites for AT use. AT User Involvement: The AT user’s perspective and desires for technology out- comes are often not represented or acknowledged in AT eval- uations. When an AT user is not considered as part of the team when decision making, it can lead to device abandonment. Ev- ery user of AT has the right to self-determination and to be part of the decision-making process. AT User’s Needs: From the moment an AT evaluator works with a student, pa- tient, or client, the AT user's goals or wants should be consid- ered. This is the reason there is an “S” for student, in the SETT Framework (Zabala) and an “H” for human, in the human, activ- ity, assistive technology (HAAT) model. Person first and person centered AT evaluations are key to determining the user’s needs. Considering the question, “who will be the end user of the tech- nology?” can go a long way towards involving the AT user in the process and lead to mapping out their own plan of use. Involv- ing the AT user in instruction, training, and customization after the AT equipment arrives often has missed golden opportunities for us to have the AT user involved in investing in their own AT use. For a person to become a successful and confident user of AT, the three elements that are imperative to have are the “buy in” of understanding WHY they want to use AT, WHAT they want to learn or accomplish and seeing WHO else is using it and how

º Lotsacomptons º Lost Voice Guy

Building Capacity with The AT User when communication is challenging: It's difficult to think about capacity building when there isn't a form of communication that readily allows the person to ex- press their thoughts and feelings about their AT. So, how can there be input from the AT user if they are currently unable to communicate? Ask yourself how does my client/student/family member react to the AT tool? Gestures, facial expressions, and joint attention can be used to determine the user's input and level of Interest. One family shared a story of how a British voice was chosen for their child’s communication device. The mother recalled playing each voice for her son and watching for his reac- tion. He was the most excited for the British voice and therefore she downloaded it. Without words he was able to have input in choosing his voice for his AAC device. Family Perception: Usually a client/student’s caregiver/ parent/guardian/spouse knows very little about AT. A signifi- cant piece of creating a successful AT user is not only educating about the device but educating the family as well. “Family” can be parents, grandparents, siblings, spouses, other guardians, or caregivers. The user and family both need to understand and believe that learning to use AT will improve their quality of life. Depending on age or impairment of the user, a family may underestimate or overestimate their potential for success. Par- ents and or caregivers may feel a child is too young, or an elderly person is too old, or an individual is too impaired to use AT. Or they may simply have the idea that as soon as a tool is used, it

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Build Capacity with The Family: • Help family members to have a realistic view of how the technology can help • Involve the family in each step of the AT process from ob- taining AT to programming and maintenance • Create or encourage attendance at family support groups for AT and/or specifically AAC. • Connecting families with other families using AT is benefi- cial for continued family involvement • Have a consistent training plan not only for the initial setup of the AT, but also ongoing training. Families must know where to go for help. • Setup a “how to” notebook with helpful tips and trouble- shooting ideas for their AT. Encourage family members to store it where all caregivers have access. • Connect the family with the vendor for future training and/ or troubleshooting needs. • Create an AT newsletter to share information about AT training, user spotlights, AT events, and success stories.

will instantly make the user independent or achieve their over- all goals right “out of the box”. Families also have the benefit of seeing the user in their home settings - not the unfamiliar or sterile atmosphere of a clinic. Families will have valuable input for the “E” or Environment part of the SETT Framework (Zabala). When a family tells you that the user is very different at home - it is most often the truth! For example, a clinician might observe someone who is aggressive or angry, but at home they are calm and show no behaviors.

FAMILY

Family Involvement: It is imperative to understand WHY a user wants to begin us- ing AT. Everyone has the desire to communicate and the need for movement. Does the user have one but not the other? If the user's goal and the family’s goal match that will be your starting point! If you begin with that specific focus and they are successful, you are much more likely to get continued “buy in.” The family will play such a large role in modeling and assisting the user that it is also helpful to guide them through identifying their“why”as well. If they hope he/she can develop greater inde- pendence in certain areas, then they will want to see how using the device will help them take steps toward independence, as well as improved quality of life. Many families may be initially intimidated by the technology behind AAC devices and the bulk or keeping track of mobility devices. Sometimes this may lead to device abandonment or denying something before it’s fully implemented during a trial. Clinicians and AT consultants build a family’s capacity by pro- viding synchronous and asynchronous training opportunities which can be very helpful. This type of ongoing training will give them the chance to learn in-person, but also have training infor- mation to refer back to so they can continue to learn and refresh the material. Depending on their familiarity and comfort-level with technology, they may need initial training in how to access virtual training as well! Family Needs: One of the most valuable needs an AT evaluator can satisfy for a family is the need for training. Family members and caregivers are the primary support for the AT user. We should always ask, “what does the family need in order to create a successful envi- ronment for the use of the AT?” At times family members have heard negative information or even false information about AT and so the AT evaluator will need to provide education in order to dispel myths and misinformation. This can be done through one-on-one visits and group training, as well as exposing them to content that shares examples of other people who use AT suc- cessfully. Even more powerful is connecting AT users and their families with other AT users in their own community.

THE SCHOOL TEAM/CARE TEAM Team Perception:

As members of a school team/care team, we often see only a small part of a person’s abilities. School teams see and work with students for a large part of the day and the routine and structure of the classroom may present a student who has differing skills than at home. A teacher’s perception of a student’s cognitive or physical abilities can impact the initiation of trialing AT in ei- ther a positive or negative way. It is especially important to help teachers understand that students will continue to do the work, but that AT is helping them do it more independently. In the clinic, therapists and teams only see the user for short periods of time in a setting that is often new and unfamiliar. It is difficult to make decisions for equipment and devices based on one or two visits. Terminology that is common to therapists may not be understood by a user or family member and cause confu- sion. For example, asking an ALS client if they have use of their hands may get you the response of “not at all” but your actual observation informs you that they can control several fingers of each hand. Physically going to a clinic can be a stressful, painful, and tiring process that clinicians should take into consideration. Team Involvement: Whole team meetings are necessary to provide support to the AT user. A school team should include input from the med- ical team and vice versa whenever possible. A school team has many professionals working together. What should these meet- ings look like? This article from ASHA provides a great descrip- tion. To learn how to best set up and run an interprofessional practice team see this article. Case studies from School teams and private practice can also be found through ASHA’s website.

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Using tools such as Quality Indicators of Assistive Technolo- gy (QIAT) and the SETT process (Student - Environment - Task - Tool) can help guide your team in decision making. Using these correctly encourages and allows all team members to provide input as to how a person completes tasks. With the task break down narrowed, it helps people to understand where the gaps are for the user to be independent. Team Needs: During the evaluation assessing the needs of the team may provide valuable insight into whether those needs match the needs of the AT user. Everyone on the team needs to be reflected in the decision-making process and have a voice, and remember you cannot have a team without considering the needs of the AT user as mentioned above. Building Capacity with the Team: As part of a school team/ care team: • Training with accountability leads to awareness, under- standing, and improved practices. As part of the imple- mentation plan, write down assignments such as who is responsible for charging a device or moving a device from location to location. • Team communication aids in collaboration. School team, medical team and family should all be in communication and understand the goals. • Short, consistent training leads to greater understanding. Provide information in written, audio or visual mediums to accommodate different learning styles. • Modeling helps generate ideas for new opportunities to use the AT • Training the entire team makes a difference in the use and team support of AT. Consider starting a community group that plans events for AAC users to meet up • In public places. • Encourage participation in Miracle League or camps for children who use Assistive Technology • If you work in the education setting, º start a school-wide core word program º Increased student usage throughout the schools leads to greater acceptance º Lobby or talk to the school board to create inclusive playgrounds º Educate your district through the parent and teacher newsletters º Educate in schools by placing informational messages in strategic places such as main hallways or by the cafeteria and gym. º Create an AT passport º Establish AT team meetings and evaluate how you are doing using the QIAT

º Train your AT Team; ongoing training is a must! º Create a position of AT Assistant for eye gaze students º Add an AT Implementation Coach º Offer multiple means of team trainings º Offer 2-5 minute classroom team training º Offer AAC Minute Clinics º Take advantage of AT vendor training and certificate programs º Develop an AT Website as a source for AT tips º Train a person in each school to troubleshoot AT º Propose including more AT in district professional devel- opment

COMMUNITY

Community Perception: Think about what you consider your “community''. Is it your workplace, children’s sports teams, your neighborhood or is it an online space? Do you regularly see and interact with people who use AT or AAC? Possibly some people are using AT and you don’t know it! Community Involvement: Creating more awareness of AT/AAC in all of our “commu- nities” helps everyone! Forward thinking leads to community awareness and change. An AT user, family member, care team, or professional can all give input that can create a difference in their respective communities. Whether the input is given to a store manager, a school principal or a city council, your input is valuable. Just think, if you or a loved one suddenly needed to use a wheelchair - how much change would be required to include them in regular day to day events? Is your workplace accessi- ble for someone who might need a wheelchair? Do you have the ability to provide materials to a student or employee who is blind or has low vision? Do you know where an accessible play- ground is in your neighborhood? During our It Takes a Village presentation at Closing the Gap in 2021, we shared a story from Japan, specifically about the Av- atar Robot Cafe. The creators of this cafe have created the most inclusive and accessible restaurant we’ve ever heard of. It is a demonstration of universal design at its best. The physical space is accessible for anyone with mobility differences. The servers (who might have physical, cognitive or speech differences) con- trol robots from their homes. Who created this amazing space? A person who experienced loneliness and feelings of isolation after repeated hospitalizations. He wanted to make a change and he succeeded! More and more we are seeing AT users in mainstream media. This is beneficial because it helps to make devices appear as typ- ical and accepted. Actors with physical, cognitive and speech differences have starred in programs such as Speechless (actor with speech and movement differences due to Cerebral Palsy),

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NCIS New Orleans, and Fear the Walking Dead (actor who was previously independently mobile is paralyzed after an accident and uses a wheelchair) , The Good Doctor (character is an autis- tic doctor) Zoe’s Extraordinary Playlist (character lost the ability to speak), and v (actor with speech and movement differences due to Cerebral Palsy) . Community Needs: Now think back to your own community. Whether you are thinking about a large city-wide community or the small com- munity within your classroom, ask yourself, what are the AT needs of those around me and what can I do to make others more aware and involved? Building Capacity in the Community: Change starts with you! • Demonstrate and model acceptance of people using AT/ AAC. • A great article regarding funding for parks and play- grounds can be found here: An Accessible Neighborhood needs Parks • If you are a therapist, consider joining your state profes- sional organization and create a special interest group for AT or AAC. º Attend AT/AAC conferences º Join AT or AAC listservs º Research AT/AAC podcasts and Blogs When we work together, build capacity for AT with the AT user, in the family, on teams, and in our communities, we will no longer feel isolated in our attempt to decrease device abandon- ment and increase independence through the use of AT. Instead, families will feel supported, our village can grow to include a larger community, and those who use AT will feel empowered and accepted. Let’s continue the discussion! We invite all to add to our It Takes A Village Padlet discussion. Use this link to join in our discussion!

YouTube video - Speechless - Official Trailer -

YouTube video - The Good Doctor - Official Trailer -

YouTube video - Breaking Bad

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WORKS CITED Abbott, Alysia. “An accessible neighborhood needs parks.” Curbed, VoxMedia, https://archive.curbed. com/2019/8/28/20835467/parks-playgrounds-for-kids-with-au- tism-disability. Accessed 12 August 2022. “All Private Practice Case Studies.” American Speech-Lan- guage-Hearing Association, https://www.asha.org/practice/ipe- ipp/case-studies/private-practice/. “All Schools Case Studies.” American Speech-Language-Hear- ing Association, https://www.asha.org/practice/ipe-ipp/ case-studies/schools/. “Assistive Technology Passport: A Promising New System.” AS I AM.IE, https://asiam.ie/assistive-technology-passport-a-prom- ising-new-system/. '"Breaking Bad" Star RJ MItte is Breaking Barriers for People with Disabilities in Hollywood.'” YouTube, Tamron Hall Show, https://www.youtube.com/watch?v=laMnP_wszeA. Buti, Mo. “The Complexity of Acceptance.” YouTube, Cerebral Palsy Foundation, 2017, https://www.youtube.com/watch?v=Y- CP4fECZoZw. Accessed 13 August 2022.

Lopez, Kristen. “'Fear the Walking Dead' Star Daryl MItch- ell says fans don't believe he's diabled.” IndieWire, https:// www.indiewire.com/2021/02/ncis-new-orleans-fear-the-walk- ing-dead-daryl-mitchell-disability-1234615898/. Accessed 13 August 2022. “Lost Voice Guy has the audience ROARING with unique comedy routine | Auditions | BGT 2018.”YouTube, 21 April 2018, https://youtu.be/xsqInns6LXQ. Accessed 13 August 2022.

“Quality Indicators for Assistive Technology Services.” QIAT, https://qiat.org/.

“"Speechless - Official Trailer."” YouTube, ABC, 17 May 2016, https://www.youtube.com/watch?v=4u55WK6AbaM. Accessed 12 August 2022.

Zabala, Joy. “SETT Framework.” Joy Zabala, Ed.D., https:// www.joyzabala.com/links-resources.

“Zoey's Extraordinary Playlist.” CURE PSP Unlocking the Se- crets of Brain Disease, https://www.psp.org/zoeysplaylist/#:~:- text=Peter%20Gallagher%20plays%20the%20role%20of%20 Zoey's%20father%2C%20Mitch%20Clarke,palsy)%2C%20 and%20cannot%20speak. Accessed 13 August 2022.

YouTube video - Mo Buti " The Complexity of Acceptance"

“Dawn Avatar Robot Cafe.” Dawn Avatar Robot Cafe, https:// dawn2021.orylab.com/en/.

“Howto:SetupandRunyourIPPTeam.”AmericanSpeech-Lan- guage-Hearing Association, https://www.asha.org/practice/ipe- ipp/how-to/Set-Up-and-Run-Your-IPP-Te/ “Interprofessional Education/ Interprofessional Practice (IPE/ IPP).” American Speech-Language-hearing Association, https:// www.asha.org/practice/ipe-ipp/.

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