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March 2019

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The Power of Communication

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When I first met Vanessa at her home, her vibrant personality greeted me at the door. For those who do not know her, Vanessa is very expressive and curious about everything that is happening in her environment. She will maneuver her body to see what is occurring in any direction and utilizes all of her capabilities to respond to others. She communicates through a combination of vocalizations, neck, body and eye movements. To the untrained eye it appears she can share her likes and dislikes, answer yes and no questions and show joy and sadness. As someone from the speaking world, I recognized the limited range of expressive language and emotions that she had in her repertoire. It was obvious from our initial meetings that what she lacked in expressive communication, she compensated with her effervescent personality, which captivated those around her. Unfortunately, this illusion of communication may have veiled the need for further examination to enhance her basic methods.   Mobility for Vanessa means confinement to a wheelchair, apart from laying in a recliner or bed. She can move her head and hands, and with intense effort, parts of her lower body and torso. She depends on others to complete all daily needs and to understand her language. Her limited ability to communicate with the world outside of her chair causes Vanessa extreme frustration which can manifest into aggressive and harmful behaviors. Her means of communication at the time consisted of a slight nod or swift side movement of her head (for “yes” and “no”), facial expressions, laughing, vocalizations, body language, and formulation of some single words that at that time were translated by staff to the best of their ability. She has a whiteboard in her bedroom that informs her of what staff are working, any upcoming events or changes to her routine to reduce her anxiety. Vanessa loves books and uses her eyes to identify choices when presented with pictures, but this is a time-consuming process with limited options.   One day, her housemate purchased a picture communication book which sparked Vanessa’s interest immediately. She requested to look at it constantly. It was decided that it made sense to have a much larger picture book so she could use her fingers to point and work on her fine motor skills simultaneously. This was not an area that I had previously explored, but I felt there must be someone who could assist her with increasing her abilities beyond this book. After some research, I found an agency that would complete a communication assessment for Vanessa. This was a novel concept to me, and I had no idea what to expect. A specialist visited with her team and assessed Vanessa through interviews, historical information, and physically with assistive technology. After it was over, Vanessa had the opportunity to use an iPad and switch instead of her book. She worked with her staff to create pictures of places she liked to visit, activities in which she wanted to participate, clothes she wanted to wear. This opened a window for her to speak, and however basic those words were, they were hers.   This opened a window for me as well. My mind started to see the connections communication had with everything. When walking through our day program, I saw a reoccurring vacancy between almost every individual and staff. I was thinking, “How did I miss this?! Why didn’t any of us question the lack of communication coming from all of these places?” My focus turned to those speaking - the staff. I heard staff offering options, then making the decisions, then changing the activity, and repeating the same format over again. What did I hear from the individuals? I heard silence. To give a realistic description, a room can be a loud, chaotic place at times, full of noises, music, TV, people. But the silence I heard was evident, and it was the deprivation of meaningful conversation. My next question was, “Now that I see it, what am I going to do about it?” I began reading and investigating communication and devices, seeking out as much knowledge as quickly as possible. I had to be less of a novice I was if I was going to convince others how much these systems and assessments were needed.   My former supervisor didn’t need much convincing and was supportive from the start. She introduced me to an amazing person, Heather Smith, a Speech-Language Pathologist from our Early Childhood program. Heather ended up being the most valuable part of this project. She took my scattered thoughts and made them into a singular vision - to one day walk through the program rooms and hear the individuals speak to staff, to themselves, and to each other. Highly motivated with this revelation, Heather and I blindly embarked on a journey to create a utopia of voices and ran. We compensated for what we didn’t know with good intentions and the desire to do whatever was needed and to do it well. I couldn’t have designed a better partner, as she had years of experience working in early intervention with communication services that are a fundamental part of a child’s plan, but not a readily available service for adults. I found that some adults owned devices, but they were outdated and had been sitting unused for years. Heather and I fumbled through identifying what services we could provide and how to offer them to everyone.   Fast forwarding a few months, Heather has completed multiple assessments with adults in our day program and residential homes. There are communication boards and books in all day program rooms. Individuals have access to iPads with communication applications to begin their own journey. In between her two primary jobs, Heather has acquired a permanent device for one individual and others have trial devices, including Vanessa, to peruse which is the most functional for each of their needs. Recently, we had the second session with a representative for a device that can use a person’s eye gaze or head tracking to access the images on screen instead of a switch or fingers. Now Vanessa no longer struggles to maintain control over her hands to push a button, but can speak fluently with the motion of her head. When I greeted her last time, she said, “Hi, my name is Vanessa.” It was so shocking to me, even knowing she was capable, that I continued to ask her questions and only realized after walking away from her, that we just had our first reciprocal conversation.   Before this world of Augmentative and Assistive Communication revealed itself to me, I could summarize the best part of my job as helping others experience high quality lives. Now the best part of my job is to witness them discover what it means to truly actualize it.  

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Excentia Announces Rebrand to Excentia Human Services

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LANCASTER, PA (September 10, 2019) — Excentia is pleased to announce its rebranding to Excentia Human Services, effective today. Initiated as part of the organization’s new strategic plan, the goal of the rebrand is to better reflect its newly expanded mission of providing services throughout the lifespan for all people to have equal value and opportunities to lead productive and fulfilling lives. The rebranding includes a redesigned logo, tagline, vision, and a new website to be launched by the end of the year.   “We have developed a strong vision of what we want to be in the future as a human services provider. This vision includes building on the success of our current programs, as well as growing our reach to other underserved populations in need of services,” said Excentia’s CEO, Chris Shaak.   The change comes after the organization’s 50+ years of service in Lancaster, Pennsylvania. Under its official corporate name, the PAI Corporation, the organization was formed in 1986 from a larger multi-county organization, Prospectus Associates. In 2011, the PAI Corporation acquired United Support Group, a Lancaster-based organization founded in 1993. In 2012, the PAI Corporation changed its name to Excentia. Finally, the Lancaster-based S. June Smith Center, which was founded in 1965, was acquired by Excentia in 2013.   As part of transitioning to Excentia Human Services, the organization will phase out the use of any other names, including the S. June Smith Center. While Excentia Human Services remains committed to continuing the legacy of Dr. S. June Smith, this program will be referred to as Early Childhood Services. By unifying under the Excentia Human Services name, the community will have a better understanding of what the organization does and the lifespan of services it provides.   “As Board Chair of Excentia, my commitment to this amazing organization couldn’t be stronger” said Lisa Johanning, SVP/Director Talent Acquisition for Fulton Financial Corporation. “The organization has grown tremendously and stands as a leader in providing an exceptional level of care to those we serve and support. I’m passionate about making our schools, communities, and workplaces as inclusive as possible, and Excentia Human Services is a valued partner to make this happen.”   For more information, please contact Brittany Grear at bgrear@excentiahumanservices.org.

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TimberNook from an OT Perspective

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The TimberNook program is designed to provide children the opportunity to explore nature, learn from the environment around them, and engage in creative play. As occupational therapists, we understand how much an individual’s environment can impact their overall growth. Occupational therapy views play as the most important element to a child’s development. As the American Occupational Therapy Association explains,   “It is often through play that children learn to make sense of the world around them. It is a child’s ‘job’ or ‘occupation’ to play to develop physical coordination, emotional maturity, social skills to interact with other children, and self-confidence to try new experiences and explore new environments.”   TimberNook provides the opportunity for children to develop all these areas while playing outside in nature. Throughout the summer, we have observed an increase in self-direction and development of new skills as children were challenged to engage in play with few directions and no adults providing suggestions about what they could play. The Storybook session with children ages 4-7 began with a morning song, get to know you game, rule review and reading a book before the kids were set loose to play with whatever and whomever they chose. As an adult, watching children navigate social situations, maneuver around obstacles in the woods, and create new games from their own imaginations was an amazing thing to witness. As the week progressed, younger children were asking for help from the older kids and working together to execute a plan or simply open a container.   Another valuable element to TimberNook is the focus on developing independence and problem-solving. In today’s world, children are so prone to seeking adult guidance as soon as something becomes challenging – not so with Timbernook. Children are given the time and space to think through how they could approach any given task and be successful. When they ask a TimberNook staff member a question, staff will often say “how do you think you could solve that problem?” before providing a suggestion. Children are also encouraged to develop the skill of “interoception” by acknowledging when their bodies need water and snacks to fuel themselves throughout the day. Once the kids realized they were able to go get their own snack and drink, asking for help from peers as needed, they began working in a snack break into their play to recharge for the rest of the day. It’s amazing what time and space can do to encourage children to learn and grow!   Ready to give the TimberNook experience a try? There are still 3 sessions left this year! Learn more and register here.          Kristen Beverly, MS, OTS Molly Bartholomew, MS, OTS Elizabethtown College

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Excentia’s Response to the DSP Crisis

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What is a DSP?   People with developmental needs and autism have every right to live a happy, productive life and be involved in the community. Sometimes this isn’t possible without the help of a Direct Support Professional. DSPs help individuals on a daily basis with anything they need, from tying their shoes, to making dinner, to helping them catch the bus. DSPs spend anywhere from a few hours a week to 24/7 with the individuals they support.   DSPs are one of the most essential roles here at Excentia, making up more than 75% of our staff. They are the embodiment of our mission to enable people with developmental needs to live as independently and fully as they desire within the community.   What is the DSP Crisis?   The role of a DSP is one of the most important, but not always the easiest. There are 55,000 DSPs in Pennsylvania, which clearly illustrates the high demand for their services. However, in 2018 alone, 13,000 of these positions were left unfilled, and 20,000 turned over.   This high turnover rate and so many unfilled positions can lead to individuals not getting the level of care they deserve. This deficit means the DSPs who are employed must work longer hours, provide more care, and get burned out more easily. When new employees are hired, they may get thrown into the field too quickly without proper training, work long hours, or be paired with an individual whose needs they are unable to meet. All these factors can contribute to improper care of individuals, no matter the intention.   Excentia’s Role   Excentia is committed to doing our part to fix the national DSP crisis. As DSPs have one of the most important roles at Excentia, we do our best to ensure they are satisfied with their job. We take the necessary steps to keep our employees happy and healthy, so they can provide the best support and care possible to the individuals we serve. According to a recent employee satisfaction survey, 90% of Excentia employees feel that their work is valued, and would like to work at Excentia for a long time.   Part of the reason our satisfaction rate is so high is because we are constantly working hard to ensure all DSP positions are filled with knowledgeable and compassionate people. In addition to phone screens and background checks, potential DSPs are taken on site visits to where they will be working to ensure they are prepared for their new role.   Employees receive comprehensive paid training on the best care practices, the history of how individuals with developmental needs and autism have been treated in the past, and the values of Excentia so they are able to provide care to the best of their abilities. DSPs are also offered benefits, higher weekend pay, a retention bonus, and employee appreciation events. Excentia offers competitive pay based on position, schedule, and experience because we believe that DSPs deserve competitive compensation for the important work they do. This also ensures that the best possible supports are provided to the people we serve.   What You Can Do   The most important thing you can do is educate yourself and others, and advocate for those who can’t advocate for themselves. Pennsylvania Advocacy and Resources for Autism and Intellectual Disability (PAR) offers an advocacy toolkit including many helpful resources to help with the DSP crisis. They offer a letter you can ask your legislator to sign requesting their support for more funds to be allocated for Direct Support Professionals, and many other resources.   The DSP Crisis is one that Excentia is working hard to eliminate, and you can too. People with developmental disabilities have every right to all the supports they need, and we will continue to work towards achieving this goal. If you’re interested in becoming a DSP, apply at ourexcentia.org. We offer a variety of full-time and part-time positions available that allow you to make a positive impact each and every day.

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Stephanie's Employment Story

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Employment levels for people with disabilities are low, even in this strong economy. As of 2017, less than 19% of people with disabilities were employed, according to the U.S. Bureau of Labor. In contrast, the employment-population ratio for those without a disability was nearly 66%. Customized and Supported Employment is a tool we can use to begin to balance out those statistics.   At Excentia, we believe all people should strive for competitive and integrated employment. We utilize a Customized and Supported Employment approach to assist people in achieving their employment goals. We begin by discovering a person’s talents and interests that will direct them towards an enjoyable career path. We then support the person to acquire, obtain, and maintain their employment. We utilize many other supports and services to assist people in being competitively employed. For Stephanie, we started supporting her through the Office of Vocational Rehabilitation.   Stephanie is part of our Residential Program and has been very eager to get back to work. She has worked with E.A.R.S. and Goodwill in the past, but neither was quite the right fit for her. She applied for services with OVR and requested Excentia as her service provider. I met Stephanie for the first time back in October of 2018.   Stephanie knew she wanted to find meaningful employment, but she needed some help taking the first steps. Discovery is the first aspect of Customized Employment. This includes exploring and performing tasks from different areas of the “Strengths and Interests” that were identified during the completion of the Discovery Profile. Stephanie and her Job Coach did several job trials at locations such as Dunkin Donuts, New Holland Re-Uzit, and Thomas Trading. We also went to several places of business to enquire about what a job there would entail, such as Weis Markets, Dollar Tree and Spooky Nook Sports.   When we met Barbara Shellenberger from “The Nook”, she appreciated Stephanie’s enthusiasm and was interested in helping Stephanie obtain employment. Barbara sent Stephanie’s resume to her co-worker, Dustin Sload, that manages the Facilities Enhancement Department at the Lanco Fieldhouse, which is a subsidiary of Spooky Nook. He contacted us and we toured the facility. Stephanie stated that she would like to work there because she could complete her job duties in the morning before the facility was open to the public. At that time there would be no distractions, which had been a barrier to maintaining employment for Stephanie in the past. Even better, she could essentially complete her tasks during any 2-3 hour period, between 8am and 2pm. That suited her because she would have a key card along with her ID and all the responsibility that goes with it. Dustin was pleased with Stephanie’s enthusiasm and interest. He informed Stephanie that he would put her name forward with the HR Department when he returned to the main facility. She got an email later that day informing her of the job offer!   Stephanie is now an official employee of Spooky Nook which, by the way, includes a free pass to use all the facilities, and a 35% discount at the hotel and restaurant. She will still need the support of a job coach to navigate some of the aspects of her new job, but with Stephanie’s strong work ethic and team of supporters, she’ll be a great success story for Integrated & Competitive/Supported Employment before you know it. In my opinion, she already is.

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The Most Magical Trip on Earth

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"The bumps are tickling my tummy!" Ryan yelled as we jetted down the runway. Years of working and saving up had finally paid off. "It's party time!" Ryan shouted. Everyone on the plane was in agreement - it was party time! Ryan and I were off to Disney World.   Those who don't know Ryan are missing out. Ryan is a 29 year old man whose passion for life is second only to his passion for having a good time. He is a young man who people look up to, who does not allow others to determine his ability. This became even more evident on our trip to the most magical place on Earth.   In this field, we are constantly reminded that we need to empower others. I forgot what this looked like until Ryan and I were at the Philadelphia International Airport. Although Ryan was in full party mode, I witnessed a look of defeat on his face when he was told to sit in a wheelchair, as him walking through the airport was a liability (for the airport). Those who know Ryan know he was stuck in a wheelchair up until the age of 20. He set a goal of walking across the stage on his high school graduation day to receive his diploma and he achieved this goal. This made him determined to never limit himself to a wheelchair again. Yet, there he was.   However, he didn't let that one small hiccup slow him down. Once we were at the gate and the wheelchair was gone, Ryan and I were back to full celebration mode as he chatted with every person he could find. The flight, the drive, the hotel, and a short sleep were taken care of and we found ourselves waking up the morning of the big day. Time for Disney!   Ryan was determined to see it all, and he certainly did! We went to Magic Kingdom the first day and he refused to stop. He did not let the distance between attractions slow him down and before we knew it lunch time had come. Around noon, I asked Ryan, "are you ready for lunch?" "Nope, not yet!" Ryan responded. Alright then, let's keep going! At 1:00 it was the same answer, then 2:00, then 3:00 and he still didn't want to stop. After all, according to Ryan, "we have to watch the parade!" Finally, 4:30 rolled around and I had to put my foot down. "Ryan, I'm stopping and I am eating." Ryan said "me too, Jake. I am starving!" I then asked him why he didn't want to eat before. His response was "still too much to do!" Ryan was overwhelmed and he loved it. I loved it. I had the absolute pleasure of seeing someone's dream come true and not only did I get to watch him live it, I was absorbed in the enchantment of it.   I was unable to take in the gravity of the moment until it was the end of the night and we waited for the fireworks. Ryan explained to me that he had never seen a fireworks show and asked if it would be neat. Never seeing one at Disney before, all I could say was, "Yeah, I think it will be a pretty good show." I did not realize how unprepared I was for the moment.   Ryan, never one to miss a conversation with anyone around his age (especially ladies!), began to steal the show. A group of people gathered around where we were standing to get ready for the fireworks. Ryan began to chat with all those near him and everyone fell in love with his enthusiasm, openness, and smile. Everyone wanted pictures with him and they wanted to know more about him.   Just then, the lights went down and it was time for the fireworks. Ryan was excited and he expressed it. As the show began, he let out a yell and it changed the perspective from which I was watching the show. I was no longer seeing fireworks like I had seen them before; I was seeing them, and this whole trip, through Ryan's eyes. He made the sacrifice of working and saving, dreaming and doing. He did it! I stood there watching him and as the tears flowed down my face, I realized how lucky I am to know Ryan. He doesn't just take in the big things, he takes in everything. As I stood there watching him, I realized the moment didn't just take me in, it had also taken in the people around us he had befriended moments before.   They were finding themselves emotional over the pure joy one person was experiencing. As I wiped tears from my eyes, I noticed others doing the same and pointing to Ryan - not because he was different, but because he was there and experiencing the moment with them.   Although the trip did not stop there, it did become a life changing moment for the two of us (especially me). We went to Hollywood Studios on the second day and Ryan was able to meet some of his favorite characters like Woody, Buzz Lightyear, The Incredibles, and the famous mouse duo. Ryan thanked me at the end of the trip for going with him and the only thing I could process was how indebted I was to him. He helped me see that nothing should stop us from reaching for our dreams and working hard to make them happen. Ryan is one of the most interesting, kind, and grateful people I have ever met. Anyone who has interacted with him truly knows what kind of people Excentia gets the pleasure of supporting. Being out of direct care for a few years made me realize that without daily interactions with the people we support, we truly cannot know what is needed in their lives. Thanks to Ryan, I have remembered.

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