When the Physical Becomes Virtual Overnight: Creating

When the Physical Becomes Virtual Overnight: Creating Novel Approaches to Day Services By Jordan Jankus

leadership, policy & implementation

When the Physical Becomes Virtual Overnight: Creating Novel Approaches to Day Services

You hear about the “new normal,” but in the field of adult day services for people with intellectual and developmental disabil- ities (“I/DD”), this year has proven to be anything but “normal.” Take a group of people that for so long have been viewed as un- equal in many ways – especially digitally – and turn their world upside down. Instead of meeting in a typical physical day ser- vices setting, they hear - “We’ll see you on Zoom on your tablet later today.” What is Zoom and how do I use this iPad to connect to it? Service delivery in many fields, like K-12 instruction, during the COVID-19 pandemic has shifted rapidly in order to keep people connected. I’d like to share with you some of our experi- ences at my agency and how everyday personal technology has had such an impact on our work. I’m with The Arc Westchester, located in Westchester Coun- ty, NY, about 25 miles north of New York City. We are a full-ser- vice agency, serving about 2,000 people across their lifetimes, providing integrated preschool, residential (forty-three homes), vocational and day habilitation services (nine sites). We are one of 600 chapters of the national organization, The Arc, which has operations in most states. My role at the agency is to come up with innovative ways to use personal technology to promote self-advocacy, greater independence and lifelong learning. I have been an evangelist on technology going back 41 years, when my wonderful daughter, Jessica, was born with multiple developmental disabilities. She has tried so many different de- vices over the years, but for the past ten years since the iPad de- buted, this tablet has become an essential part of her day and really prompted my interest in the possibilities of everyday per- sonal technology.

Back in mid-March this year, our management decided to cease physical services, except for those people living in group homes and apartments served by our agency staff. Our first pri- ority was to ensure the safety of all during this pandemic and we adjusted the staffing in our homes so that there were consistent personnel in the houses and adequate PPE available (although we are considered “essential workers,” PPE was initially in very short supply and it was only through herculean staff efforts and coordination with other New York State Arc chapters that safety was ensured). Our day services staff took on new roles, delivering some ser- vices in agency residences, but many stepped aggressively into the 21st century, employing Zoom and GoTo Meeting and other technology to deliver virtual services. To better understand this challenge, many of these direct support professionals, though compassionate and caring, don’t have the depth of teaching ex- pertise you would find in a K-12 school setting. Although they do such important work each day with the people they serve, their state-mandated pay is woefully inadequate and a source of regular advocacy efforts with the state and federal government. Now this staff was challenged to locate the necessary hardware and software to deliver remote services, quickly learn the under- lying technology, connect with individuals in agency-managed residences along with those living with their families and create an interesting, age-appropriate curriculum. This all was happening in the context of our agency’s tech- nology infrastructure, which was in need of many improve- ments in hardware, software and training, all of which had been identified for correction in our multi-year strategic plan. Federal and state funding of agencies supporting people with I/DD has

JORDAN JANKUS has been in the field of human services for over twenty years. He holds the position of Coordinator for Person-Centered and Cognitive Supports for The Arc Westchester which serves over 2,000 people with cognitive disabilities in Westchester County, NY. jjankus@arcwestchester.org 914-462-2493 https://arcwestchester.org/news/learning-resources/ ?

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Figure 1

been in decline over the past ten years and has put tremendous pressure on spending priorities. As for access to personal tech- nology, the individuals we serve have often members of the “digital divide”. A survey of The Arc chapters in June 2020, with 292 chapters reporting, showed the following: (See Figure 1) More details of this survey can be viewed at https://tinyurl. com/y2m5g4kb. Many advocacy organizations have focused on the issue of “digital equity” and you can lend your support to their efforts by helping support organizations like the Coleman Institute for Cognitive Disabilities who were at the forefront of this movement with their “Declaration of the Rights of People with Cognitive Disabilities to Technology and Information Ac- cess” (https://www.colemaninstitute.org/declaration-tools-2/.) One additional insight to share about the adult care system for people with I/DD is that funding for this system principal- ly comes from Medicaid, a Federal/State sharing arrangement. Traditionally, Medicaid has focused on the health and safety of the people and programs it supports, centered on more of a medical model of care while ongoing learning has mostly been concerned with the teaching of daily living skills. As the care system has moved from an institutional based model to a com- munity integration model, so has the teaching of employment skills and lifelong learning become more important. Just be- cause a person with I/DD has received a certificate of comple- tion from a secondary school, learning doesn’t stop at 21 and we now realize that neuroplasticity combined with lifelong learning are solutions awaiting greater implementation in the adult care system. We had to push through these many challenges and deal with the situation at hand during this pandemic. Our next priority was to reach out to program participants and staff via remote-meeting platforms and provide information on our ef- forts to keep everyone safe and healthy, share information on program status and reduce their feelings of isolation. Many people were separated from their families and friends during a very frightening time and without remote connections, fear and apprehension would have spread. As a personal example, my daughter’s residence was put under quarantine in April for several weeks and without the ability to connect with her via

FaceTime, our concerns would have gone unchecked. Prior to the pandemic, our agency’s operations had been mostly based in physical locations, with travel across a large county and every- one was used to seeing their friends, staff and therapists each day. After addressing that issues of fear and isolation, we expand- ed our focus to share existing web-based resources and we cre- ated a “Learning Resources for Our Community” page on our website (https://arcwestchester.org/news/learning-resources/) that focused on many important topics including Advocacy, Health, Exploration, Mental Health, Daily Living Skills, Art, Read- ing, Technology and other activity ideas. When we started to create our own virtual learning sessions, we discovered some very important (and now obvious to many) things to avoid in this new medium. • Just because you have a camera and a microphone, that doesn’t mean that you can make an interesting and entertain- ing lesson. You have to engage your audience and get used to the lack of immediacy, the distractions and the inability to clearly read body language and easily assess your audience’s interest level. The lack of presenter/audience interaction will doom any session. Enlisting the individuals we support as pro- gram hosts, enlivens any session. • Enthusiasm! The presenter must sound interested! If the pre- senter doesn’t appear to be interested, why should the audi- ence care? • Limit distracting background visuals and sounds – turn off ringers, alarms and notifications on your desktop computer, tablets and smartphones. Be aware of how your visual back- ground appears to viewers. Will the mess on your desk dis- tract from the impact of your message? Is your background too bright, causing your face to be in shadow? Do you have any light source that you can put in front of you to remove shadows? Avoid the ghoulish effect from lighting your face from below. If you’re using a Zoom background, is it making your face darker than the background or making you look like a “cutout”? • Put a sign on your door to let others in your household or of- fice know that you’re in a session and should not be disturbed

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with a knock on your door or calling out your name. • If you can manage it, two screens are best for a desktop pre- sentation. It allows you to have one screen as the audience view and the other as your management screen, showing the PowerPoint presentation along with comments and informa- tion on your audience – names, who has video, who is unmut- ed, etc. • Make sure you have a strong WiFi connection. If possible, the moderator should originate the call from a hard-wired Ether- net connection, like a desktop or laptop networked computer. If you can’t do this, move around the site until you find the location for the strongest WiFi signal. • If you’re using a PowerPoint or other type of slide presenta-

• Provide an unstructured time for participants to just chat amongst themselves to replicate the social connections that seemed so commonplace just months ago. • Script your presentation rather than winging it. Improvisation in-person is much easier than doing it online where it can seem like an exercise without direction. Some of the day service sessions that have been well-re- ceived are online book clubs, scavenger hunts within a person’s home, healthy cooking lessons, talent shows, exercise sessions and money management. With many of the individuals in our employment programs furloughed during this crisis, remote connections to keep interviewing and job skills honed were very important, along with teaching them the practices they will need to use to stay safe and healthy when they return to their workplace. To make these virtual services possible, we’ve added a sig- nificant number of tablets and smartphones to keep our partic- ipants and staff connected. In order to ensure that these devic- es are secure and available with relevant apps, we’ve made the important investment in a Mobile Device Management (MDM) system throughout the agency. Prior to implementing the MDM system, an iPad would turn up with an unknown passcode and become an unusable tech brick. All of these significant expendi- tures have relied upon the funding received from our affiliated Arc Westchester Foundation, as government funds haven’t been available to pay for this investment in personal technology. As this is being written in late August 2020, our agency’s physical programs are slowly and carefully reopening on a lim- ited basis. We are emerging from this experience with the pride of low mortality rates and an enthusiastic workforce striving to help our participants rejoin their communities. There are per- manent lessons from this experience, such as: • The barriers that have been successfully broken down be- tween agency departments as a matter of necessity during the pandemic must be nurtured so that open lines of commu- nication remain an essential part of our organization. • Virtual services will be a permanent part of our learning tool- kit. • Due to the fact that our staff need more tools to support Life- long Learning, we need to develop interactive video lessons they can readily use with their program participants, limiting the lesson preparation time required of the staff, giving them the ability to pause the presentation and engage in lively re- al-time local group discussions and. An elementary example of this type of tool is the first in our “Advocacy Game Show” series that you can preview at https://www.youtube.com/watch?v=vvys7RalVSU • We can learn so much from the K-12 system and the virtual services they’ve developed and also those our fellow adult agencies have created. We see a definite need for a central- ized portal where best practices and learning resources for virtual services can be collected, shared and leveraged to our

tion, take a look at the slides and ensure: • Simple, non-distracting slide design

• Minimal text on each slide and make sure font is read- able. A slide deck shouldn’t be a book or the presentation script. • Text should be direct – not everything has to be put into full sentences. Just highlight the main points! Use graph- ic to emphasize your message • At the outset, tell people what you’re going to cover, do it, and then recap what you’ve covered in the session. • Is the session scheduled for a good time of day, not too early or too late, based upon your audience? • Is the session a good length? An hour is a long time to main- tain people’s interests. • Be human, but don’t make excuses for mistakes – just move on! Don’t dwell on the problem and freeze. • Enlist the support of families and residential staff to help with the scheduling and logistics arrangement for virtual sessions. Provide them with a schedule and list of topics for upcoming sessions. • Review online etiquette with participants so that sessions start on time, with limited crosstalk and abundant respect for everyone involved (see our Zoom Tips at https://youtu.be/YMl-r0C4zQs).

YouTube Video - https://youtu.be/YMl-r0C4zQs

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YouTube Video - https://www.youtube.com/watch?v=vvys7RalVSU

mutual benefit. Another important lesson in breaking down silos across service and educational systems.

Finally, the greatest takeaway is seeing what the human spir- it can do in the face of adversity. Staff that risked their health by delivering PPE to residences in desperate need. People who elected to stay for days and nights in our homes, supporting and providing loving care to our residents. Our day services staff whose optimism and creativity were anchors of calm across the digital ether. The people we support, their families and our dedicated and caring staff can now confidently face many other challenges that may be ahead of us.

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