There is a certain unspoken bond between siblings – a fierce loyalty and love that knows no bounds. When their mother passed, it was only natural that Jack would assume care of his older brother, Jimmy.
Jimmy faced two immediate hurdles when he was diagnosed with autism at a young age. The stigma of living with an intellectual or developmental disability, as well as severely lacking supports and programs. As his guardian, Jack works with Jimmy to make sure he is living the fullest life possible both at home and in the community.
It is no secret that the pandemic has been incredibly disruptive for day-to-day life, but even more so for those with intellectual and developmental disabilities, who depend on consistency and routine. Jack noted that the level of care Jimmy has received over the years is incomparable, especially since the onset of the pandemic and initial suspension of our in-person supports.
He mentioned that Jayne Rachier, program manager at Incompass, has gone above and beyond. “Jimmy hasn’t returned to day programs since last March because we’re worried about his health, but Jayne calls every week to check on him.”
After nearly 30 years attending our day programs, it goes without saying that Jimmy has left his mark on staff and peers alike. Prior to the pandemic, you would find him co-leading the morning exercise routine and reviewing the Morning Meeting Board to get familiar with the day’s schedule. There is one activity, however, that Jimmy finds the most solace in. Music.
Music isn’t only a source of comfort but also serves as a tool to build his communication skills. Jimmy has been nonverbal for the majority of his life but gets creative in the ways he expresses himself. If there was ever a special occasion, such as a multicultural celebration or Urban Youth activity, Jimmy would open with the National Anthem. Baseball bingo activities were commemorated with his rendition of “Take Me Out to the Ball Game”.
Health and safety concerns may have halted these experiences, but it certainly hasn’t slowed Jimmy down one bit. He faithfully wakes up his brother each morning to lead his exercise routine at home. We all plan on taking a page out of his book – teamwork makes the dreamwork. Looking forward to having you in the Incompass halls again soon, Jimmy!
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!
It was the morning of March 16, 2020, that we announced LifeLinks CLASS was suspending our day programs due to the coronavirus. I often think about that initial message in the context of all we have been through – and all that we have overcome – since these notices went up around our facilities.
At the time, we were optimistically anticipating the full resumption of day programs within two weeks. Two weeks!?!? Instead, we endured – and continue to endure – the most difficult year any of us could have imagined.
But I’m so proud to say I was right about one thing…we were going to rise to the challenge!
Reflecting on the Past Year
Lives were lost. Families were separated. Schools were closed. And as our focus as an agency shifted to securing PPE and launching virtual programs, our front-line Care Champions faced these challenges head-on. You demonstrated your unwavering commitment to the people you support in their greatest time of need.
Group home visitations were halted, day programs were revamped to accommodate for social distancing and other COVID protocols, and virtual programs were launched. Our nursing team became a literal lifeline when health clinics and hospitals were at capacity. We’ve conducted over 1,800 COVID tests, and hosted numerous “pop-up” clinics for our community. Since October 1, we’ve recorded 26 positive staff COVID tests.
This has been a trying and emotional year for all of us, and I will honestly never be able to properly put into words the immense gratitude I have for your sacrifices.
Optimism For What’s Ahead
Now one year later, while we still aren’t back to our pre-COVID capacity, I can see brighter days are on the horizon.
Over the past six weeks, more than 300 group home residents, caregivers, and staff have been vaccinated at Incompass. Long Term Pharmacy Solutions has administered 549 doses, and 227 people are now fully vaccinated after receiving their second shot. By mid-April, every Care Champion at Incompass who chose to receive the Moderna vaccine will be fully vaccinated.
Not only that, but we are beginning to recall more and more Care Champions whose jobs were lost during the pandemic. The TREE program is back and running for the first time in months. We just opened our first group home for residents with an acquired brain injury last week. And we have more than 20 new staff members joining us this month, as we aggressively recruit for open positions to support our new group homes and day program growth.
We are continuing to demonstrate our resilience as Care Champions and our person-focused culture. Last week, we had a visit from a representative of MassHealth who was conducting on-site assessments of COVID-19 protocols at various provider agencies. Not only did we receive a perfect score, but the auditor noted the “great procedures” that she observed while she was here!
Our New Normal
Human services is all about connecting and empowering people. As I said in the fall when we announced our new brand, Incompass innovates to help the most vulnerable thrive. That’s what we do here! That’s what all of you do!
How many of you had even heard of Zoom prior to March 2020? My hand wouldn’t be up! But we made this tool a part of our everyday lives to stay connected to each other, the people we support, and their families. I asked Stacie Murphy, who manages our account, if she could pull some data for me to share with all of you.
That’s right…we’ve logged more than 1.3 million minutes on Zoom this year! Don’t get me wrong, we’re very much looking forward to returning to facility-based services and supports. But I believe that the ability to connect remotely through tools like Zoom will help us achieve our organizational goals and deliver critical services and supports to the people we serve.
Most Importantly…Thank You!
In the end, I just want to say thank you to everyone who is part of the Incompass family.
Thank you to our Care Champions. Thank you to the individuals we support. Thank you to the families and caregivers. Thank you to our donors and supporters. Thank you to our local, state, and federal officials. And thank you to the organizations who advocate for us, including The Arc, ADDP, and Providers’ Council.
It’s times like these that I’m reminded that it’s our open hearts that define us…
The Chairman of the COVID task force, Al Frugoli, sent the message below to Incompass staff last week on January 28, 2021.
Dear Care Champions:
The numbers are in! We were able to vaccinate 177 staff and individuals this week during our vaccination clinics with Long Term Pharmacy Solutions (LTPS)! Woohoo!!! We are so grateful that so many of you were able to receive the first dose of the vaccine this week, and we will be in touch with details for the February booster shot clinics in the coming weeks.
In this week’s task force update, we’re sharing a recap of our first Incompass vaccine clinics, important resources on the statewide vaccination process, and updates on our own COVID protocols.
The Vaccine Clinic:
The LTPS team has conducted a number of these clinics, and remarked on how impressed they were with our team! The clinical tandem of Alicia Mordach and Chris Snell specifically want to recognize a few members of the team who went above and beyond to ensure we had a smooth process:
Dianne Learnard
Bev Champagne
Stacie Murphy
Melanie Marino
The consensus among Care Champions was some sore arms the next day for sure, but no major side-effects from the shot. Our group home residents were fortunate that our highly-skilled residential nursing team was in the observation room keeping an eye on them after their shot and monitoring them this week:
Barbara Zalwango
Eunice Wangeera
Katheryn Burke
A lot of you were also happy to share your stories on why you got vaccinated! I encourage you to check out some of the pictures from our two clinics on our Facebook and Instagram pages. And if you haven’t yet, check out our newly-launched vaccine web portal where you can find a recording of last week’s Virtual Town Hall with Jean. Dan also interviewed a few of in the observation room after receiving the shot, and you can hear those clips on the latest All Incompassing Minute podcast.
Vaccine Eligibility:
For those who couldn’t attend and wish to be vaccinated, all individual-facing Incompass staff are now eligible to receive the vaccine under the latest Phase 1 guidelines. While we’re actively working with LTPS to procure more doses for another clinic, at this time we don’t know when – or if – we’ll be able to hold another one. The state has opened numerous vaccine clinics where eligible members of the population can sign up to be vaccinated. While not every clinic requires it, if you need proof of employment, you can reach out to human resources.
You can view a list of vaccine clinic locations here, and download the self-attestation form for eligibility here. I recommend you pay close attention to the criteria at each individual site, as some are restricted to residents of a town/city or are only serving senior citizens. Nearly all of them require an appointment to be made in advance through the listed website as well; they aren’t accepting walk-ins. The Governor announced this week that he anticipates having 165 clinics statewide by the end of next month, so check back regularly as more sites in our area hopefully come online.
COVID Safety Protocols, Testing, and Updates:
Remember, while this is an important step forward, everyone who has received the vaccine must continue to follow all of the COVID protocols at Incompass. The vaccine does not prevent the spread of coronavirus, so wearing a mask, socially distancing, reporting symptoms, etc. is critical to protect not only yourself but those around you. (And remember that KN95 masks must be worn at all times in program areas.) We’ll continue to do this #ForEachOther, as the health and safety of all of you and the people you support remains our top priority.
On that note, day programs in our Parker Street facility were suspended yesterday for 14 days after we got word of a positive staff test on Monday. The staff member is asymptomatic but had reported interactions with each of our three Parker cohorts in the days prior to the positive test. We are following our own protocols around exposure – meaning that each of the cohorts and respective DSPs are undergoing testing and need to isolate until February 8 to prevent an outbreak. The day program facilities will also undergo a deep cleaning during this period. We are working on engaging with our participants virtually over the next two weeks to help with the transition, and look forward to welcoming them back!
These are difficult decisions, but taking the necessary precautions is our best defense against an outbreak. And your continued cooperation and vigilance is absolutely a key reason for our success.
That’s all for this week! Keep getting tested. Keep being vigilant. Keep self-reporting. And keep being hopeful. While Chelmsford and Lawrence remain in the “high-risk” designation, the statewide positivity rate dropped below 5.0% last week for the first time since November, and we’re hopeful that’s a sign of things to come. I don’t know what the future holds, but I do know that we will gather again someday and it will be something to celebrate!
As I sit here this afternoon, I am still shocked by what I watched transpire at the United States Capitol yesterday. We all sat helplessly in witness to a violent assault on our democracy; one that aimed to thwart the most sacred of constitutional duties: the peaceful transition of power.
As the world’s attention descended on Washington, D.C., many of us felt an overwhelming sense of anxiety. We felt the same disbelief, sadness, and anger. And I’m sure you all were asking what seemed like impossible questions to answer, like how did it get to his point?
I’m not here to provide answers; only to share my perspective. I firmly believe that the values we share as a country are much greater than the political ideals that divide us. And nobody embodies those values more than all of you.
Our diverse community – and all of you who comprise it – gives me hope. Every day, people from all backgrounds come together with a common focus: to empower the most vulnerable members of our population to live happy and fulfilling lives. Your open hearts and commitment to others make our region a better place. And as a Care Champion, you exemplify the values that bring out the best in all of us. And for that, I am grateful.
Just know that it’s okay to feel anxious today. But never forget the positive impact you have on the lives of so many people around us. It’s what motivates me every day.
Now one year later, while we still aren’t back to our pre-COVID capacity, I can see brighter days are on the horizon.
In the end, I just want to say thank you to everyone who is part of the Incompass family.
