Last week we celebrated Nurses Week, and if you ask us, one week just doesn’t seem like enough!
What would we be without our tremendous team of Incompass nurses? We’d be falling apart quite literally! We are indebted to them for their gracious dedication to supporting the vulnerable people in our programs and group homes.
The timing also couldn’t have been better to award Kate Burk, part of the nursing team, with an ADDP Continuing Education scholarship. A big thanks to Seven Hills Foundation and Justice Resource Institute, the sponsors who make this type of aid available to our care champions. Well deserved, indeed!
Kate Burk and Incompass COO Al Frugoli pose together.
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!
LifeLinks CLASS partnered with Fallon Health last Friday, August 21 to host a pop-up COVID-19 testing site at our main office in Chelmsford. This was one of the largest testings that Fallon has completed to date, with nearly 400 participants.
The Department of Developmental Services (DDS) has various area offices located across Massachusetts. Individuals who receive services under DDS were encouraged to register for the testing, as well as the staff who work for human services agencies in this region. LifeLinks CLASS Care Champions took the lead on getting tested #ForEachother in order to ensure the continued safety of everyone we support.
A big thank you to our Care Champions, Stacie and Melanie, for coordinating this pop-up!
No worries if you missed this opportunity — there will be an additional seven pop-up testing sites in the near future! The details on dates and locations will be available at a later date.
LifeLinks CLASS has been faced with some incredibly difficult decisions in these past few months — decisions that greatly impact our staff and the individuals that we support. As part of The Arc of Massachusett’s #DontCutUsOut campaign, it is imperative that we act fast to ensure the continued funding of our services and supports for the I/DD community.
“Adults with autism, Down syndrome, cerebral palsy, or other intellectual and developmental disabilities served by the Department of Developmental Services (DDS) will lose services if funding and policies don’t meet the requirements of the re-opening period and thereafter.”
Richard Faucher, a passionate advocate, voiced his concerns to our local legislators in the letter below:
As you know Life Links has been a rock-solid DDS contract provider for many years. For the Cadillac of providers to lay off 140 employees, it will have a devastating effect on services whether it is day or group home services.
There is no question other providers are going to have to lay off employees and maybe close down permanently. It is estimated some of these laid-off employees will seek employment at places paying more than $15 an hour thus leaving a huge void in the provider ranks when and if things return to some kind of normalcy.
As an advocate, I urge you to see what you can do to make sure there will be funding in the next budget to continue the great services providers give to our most venerable population.
Some facts affecting those below if funding and policies do not meet the re-opening time frame and future needs.
+ 10,000 persons who receive day and employment services
+ 9,000 individuals in congregate living
+ 1,300 new students in transition from high school to adult life
+ Additional persons receiving Mass-Health services
(these are stats from the ARC of Mass)
Not that I have to remind you all, but the Department of Developmental Disability (DDS) generates more funds back to the general fund than any other agency in the Commonwealth.
On a personal note: My brother Pete who lived in a group home in Tewksbury passed away on May 13, 2020. His passing was not from Covid-19 but other complicated medical issues. He was a fighter up to the end. He died at the age of 69, a little less than 3 months before his 70th birthday. I mention this for one reason only. Many years ago in the 50’s the life expectancy was I think less than 40-50. If it wasn’t for our families great gene pool AND the outstanding support by legislatures like yourselves who cared for the developmentally disabled throughout those years and passed legislation supporting the needs of the population giving DDS and the providers the tools to do their job, Pete would not have lived as long. The Commonwealth has come a long way, but this situation we are in today reinforces more than ever the need to fund the DDS.
Thanks so much for letting me vent…I wish you and your families stay healthy and safe..
Earlier today Governor Charlie Baker announced that Phase 3 of the Reopening Massachusetts plan, which includes day habilitation and community-based day and employment services, will commence on Monday, July 6. Many of you – including staff, family, and caregivers – have already reached out to me in the hours since the press conference to ask how that impacts LifeLinks CLASS.
While we are very excited to provide these opportunities again for your loved ones, we cannot lift the day program suspension on Monday, July 6. We are still awaiting formal compliance and attestation guidance from EOHS and DDS that we need to meet before we are able to resume day programs.
After convening the COVID-19 Task Force this afternoon, here is what we know:
Day program providers must submit a comprehensive re-opening plan in compliance with requirements that have yet to be released by EOHS and DDS
Transportation plans that include “infection control strategies and maintenance of physical distancing while transporting participants” must be approved prior to re-opening.
Limitations on the number of staff allowed in the facility will impact the type of supports we are able to provide.
All day programs will operate at a reduced capacity once they are approved to be open in order to ensure proper social distancing and adherence to infection protocols.
As you can see, there is a lot to do before we are allowed to lift the suspension of day programs at LifeLinks CLASS. The task force has been working on a reopening plan and policies and now must align that plan with the soon-to-be-issued re-opening components from EOHS and DDS. We are pushing forward and will keep you informed of our progress.
But again, because of this, we CANNOT lift the suspension on Monday, July 6.
The guidance we did receive today emphasizes that day providers are encouraged to continue day program services remotely and through alternative, non-group methods when appropriate and feasible. While the task force pursues approval to re-open suspended programs, our incredible staff will continue to provide virtual services and supports in place of our facility- and community-based programs.
As much as we’d love to see you all again, we have to do this right. As I’ve said since we first made the decision to suspend day programs, we cannot re-open facilities until we as an agency can ensure the health and safety of our participants and staff.
Thank you for your patience and understanding, and more to come!
I wish you all a safe and happy Fourth of July! Be well.