For a population that typically struggles with social isolation, what is their “new normal” going to look like as COVID restrictions lift across the state? Strive2Thrive program staff at Incompass Human Services have been working to evolve the program, to better meet the needs of the population of young adults on the autism spectrum without an intellectual disability that we support.
From the beginning, socialization was a core aspect of Strive2Thrive, as well as peer mentorship and self-advocacy. Connecting with peers in their age group while building the skills they need to participate in recreational activities has been an invaluable asset for participants. Such activities acted as a bridge between social isolation and ultimately leading more full, productive, and satisfying lives in the community. Activities that initially drew participants to this program included game show nights, escape rooms, and a zombie scavenger hunt. Even a silent disco that was postponed last year – a sensory-friendly dance where participants listen to music on wireless headphones.
However, access to these types of activities was unfortunately halted by the onset of the pandemic. In response, Alicia Pagan, program manager, and Ben Waithe, ASD Specialist, got creative with a hybrid program model that utilized both in-person and virtual supports.
“Our participants are eagerly anticipating in-person connections, but now that we’ve removed a barrier to virtual sessions, we see a future where S2T participants are more engaged than ever before, and our reach will be only wider.” Pagan notes that participants will get so much more out of the community-based experiences because they are also able to connect with their peer mentors over Zoom. “Now that participants and mentors don’t need to rely on time during our community events to connect, they’re able to further immerse themselves in the social recreation!”
With everything from healthcare to education being transitioned to remote supports, program staff were concerned about “Zoom fatigue”. There was an enhanced focus on creating unique, interactive experiences with the resources available. Virtual concerts, road trips, and Netflix parties were huge hits. As well as themed trivia nights – incorporating fan favorites such as Star Wars and Harry Potter.
While the pandemic has undoubtedly brought challenges, it has also created room for new ways of thinking. Going forward supports to be included in the proposed service model will include life coaching, self-advocacy training, and group recreational activities. And what does Pagan think about these developments? “There is no substitute for being in the community, so we’re going to embrace the hybrid model. And personally, I can’t wait to see the impact.”
“How come I’m not crying?” Sandy wondered as she set up her son’s new room. Because transitioning your child to residential living doesn’t have to be a devastating experience! Especially when the staff are committed to making the house a home for your loved one.
Understandably, Sandy and Kevin were reluctant as they arrived at the latest living arrangement for their son, Craig. While they trusted the process, there was still a sense of dread. They had pictured a more solemn, barren home before they had toured the new group home-run operated Incompass Human Services.
Transitioning Craig to residential living was not a decision that Sandy and Kevin took lightly. It is every parent’s hope that they can meet every one of their child’s needs. But as Craig grew over the years, so did his needs. Safety concerns, behavioral difficulties, and food restrictions became more prevalent. Perhaps it wasn’t what they imagined for themselves when Craig was born, but his quality of life was their top priority. So, they reimagined their family’s reality.
The essence of this reality was captured perfectly the first time that Sandy and Kevin walked into the residence. “To whoever designed this home – wow. It was homey, comforting, and brought us a sense of peace,” said Sandy. She likened it to a vacation that they had taken in Italy. Stepping out of the airport initially and being overwhelmed with a sense of awe.
When asked if Craig felt the same way about the home, his parents explained that he uses alternative methods of communication because he is nonverbal. But they knew he was comfortable. “He sat down on the couch like he’s always lived there,” said Kevin.
Incompass group home residents are very thoughtfully chosen with the individual’s needs in mind. “We know that moving into a new home is a huge adjustment for families and their loved ones,” said Oscar Gyamfi Legendre, Assistant Director of Residential Services at Incompass. “We take pride in listening to family members and learning some of the routines of their loved ones because nobody knows our new resident better than them.”
Craig is on the autism spectrum, along with the rest of his housemates. Staff on each shift are specially trained in Autism Spectrum Disorder (ASD) and can anticipate and effectively address difficulties that arise because of the staff to resident ratio. Naturally, the acclimation to a new environment can be a bumpy one. Sandy and Kevin were proactive in making the transition as seamless as possible, creating a book so that staff could get to know Craig better. As well as recording videos of them preparing meals that are within his restrictive diet.
“Not only were they receptive to our input, but they also acknowledged that it would help to maintain Craig’s quality of life. And make it even better,” said Kevin.
They were blown away by the staff’s commitment to the individuals and their attention to detail. Along with his autism diagnosis, Craig also lives with epilepsy. This means that safety precautions are of the utmost importance. Staff arranged for Craig to have a lower bed frame to help reduce the risk of injury if he had a seizure while sleeping, and the floors were carpeted to help with impact. Ample opportunities for leisure, both in and out of the home, are provided for individuals including an air hockey table, treadmill, and a wonderful swing in the backyard for nicer days.
Sandy and Kevin credited two Incompass Care Champions for their memorable experience moving Craig into his Tyngsboro home. Legendre and Daniel Nginyayu, House Manager. As they said their goodbyes for the day, Nginyayu insisted, “Everything is taken care of.”
We could go on and on, but we’ll leave you with these words from Sandy and Kevin instead,
“We know now that we have found our son’s forever home.”
Every parent envisions a certain future for their child – a future filled with happiness, an opportunity for growth, and love. What would you do if you were faced with a diagnosis that would threaten that future?
Nearly 24 years ago, doctors diagnosed Fred with severe autism. Denise Boian, his mother, suspected this when he wasn’t meeting certain developmental milestones, but the news was devastating.
Still, her hopes for Fred have remained steadfast. When asked what she wants most for her son as he gets older, Denise said simply, “Happiness. I just want him to be happy.”
Now at 26 years old, Fred is living a full life at home with his family – an intentional decision that a lot of work has gone into. To make staying at home a possibility, Denise and her husband, Jeff, have prioritized the development of Fred’s communication and behavioral skills.
Being nonverbal means that Fred has had to find other ways to communicate his needs. He’s been fluent in American Sign Language (ASL) since he was a child, which has become one of the most popular language classes across the US. Still, ASL is not enough to bridge the communication gap when Fred is in more community-based settings. That is where augmentative and alternative communication (AAC) and speech-generating devices (SGD) come in.
The developmental disability (DD) community was hit especially hard by the pandemic, and many families worried about their loved ones regressing during this time of isolation. Amazingly, it was quite the opposite for Fred. For five hours a week, he works one-on-one with a special education teacher from Chelmsford High School to refine his written skills and using his SGD. He depends almost entirely on this device to communicate, and the Boston Children’s specialist that he sees was blown away by his recent progress. During their semiannual telehealth visit, Denise was beaming with pride as Fred expressed himself.
It’s no secret that Fred has some incredible people in his corner. While a loving and supportive family plays a huge role in a person’s journey in the DD community, the other piece of the puzzle is the programs and supports they receive. The Incompass Family Support Center helps the Boian family navigate these supports through the Agency with Choice (AWC) program.
When asked about staff who impacted Fred’s journey over the years, Denise noted Linda Cox, Senior Family Support Specialist, saying “She owed a lot to her.” Fred has since been transferred to Benjamin Waithe’s caseload, an Autism Spectrum Disorder Specialist, and Denise is confident that “he will show the same enthusiasm as all Incompass staff have shown our family.”
Our family support specialists help Denise manage a stipend that allows for weekly communication and behavioral therapies, respite relief, and community-based activities with Fred’s companion, Andy. Denise had this to say about their friendship, “Andy gives Fred a chance to feel like a normal kind of person. They really are like best friends.”
She often wonders what Fred’s life would have been like without this diagnosis. Would he have followed in his family’s steps and joined the military? Would he be in a relationship? She takes solace in knowing that her son will always be cared for, as her daughter will assume care of Fred one day. With the support system he has, the sky is the limit.We’re rooting for you, Fred!
During these times of social distancing, everyone has been searching for creative ways to stay engaged while at home. Our Strive2Thrive (S2T) program took things one step further by using their daily Zoom sessions to delve into the wizarding world of Harry Potter. With input from program participants, Alicia Pagan, a Family Support Specialist, was able to pull together a week of magical adventures for the group.
Which House do you belong to? The Sorting Hat quiz placed participants in Gryffindor, Hufflepuff, Ravenclaw, or Slytherin. “I enjoyed being able to share our Hogwarts houses and patronesses and getting insight into what the quizzes shared about everyone. Also just seeing everyone share their own little tidbits of knowledge and more,” said S2T mentor Kiley.
“The Harry Potter Virtual Escape Room was my favorite especially when we accomplished the task together, ” said S2T participant David. Created by a youth services librarian for a local library in Pennsylvania, the Hogwarts Digital Escape Room gave participants the option to participate individually or with friends in a competition.
Halle, a S2T member, explained why the activities were such a success, “I loved Harry Potter week because I was able to connect with my friends who love the Harry Potter franchise as well! I also liked how we toured The Wizarding World Of Harry Potter at Universal Studios on YouTube, and how we did Harry Potter Trivia because we worked as a team!”
Stay tuned to see what this innovative program comes up with next!