From Passion to Purpose
People with disabilities are so much more than their diagnosis. They are people first. They are sons and daughters, brothers and sisters, fathers and mothers, and most of all, they are people who have big dreams, passions, and life goals just like anybody else.
Meet some of the people we support who are eager to jumpstart a career, give back to their community, and leave their mark on the world by following their passions.
Learn how you can help make these passions a reality. See more on our National Developmental Disabilities Awareness Month campaign page.
Love, Family, and Life
The remarkable story of the late Bernice Cublinsky and a reunion more than 70 years in the making.
“Love (and family) has power in it. At the end, it wins over all miseries.” — Debasish Mridha
When we first met Bernice, it was five years ago in the Spring of 2013 and she had just been enrolled into receiving home- and community-based support services with us. For the next five years, Bernice would be supported by some of the finest staff members who worked closely with her as she navigated her adult life. The relationships that developed between Bernice and her staff personnel during this time were of great significance; when it was time for some of the staff members to move on to other things in their personal lives, they did so knowing that they would always keep in touch and/or be back to visit Bernice. And that they did. Even those who worked with her more than 20 years ago have kept the line of communication open for conversation and support when necessary.
For Bernice, a high-spirited eighty-six year old woman at the time we met her, filled with vigor and a charming personality that immediately captivates a room, it has been quite the rollercoaster journey for a great portion of her life. Yet this isn’t immediately revealed upon spending time with her, perhaps because she has learned to manage the pain and trauma with her infectious humor and personality. Bernice was born to Sadie and Abraham Cublinsky on the Lower East Side of New York in 1927. She was one of five children—two boys and three girls—who lived a relatively typical childhood before experiencing a single event during her teenage years that would change her life and family as she knew it forever. In July 1945, Bernice’s mother died of cancer leaving her father to care for her and her four siblings. Unprepared to raise five children on his own and reluctant to assume the responsibility of fatherhood in the absence of his wife, Bernice’s father gave his children up for adoption. Since then, nothing has been the same for the Cublisnky family unit.
Bernice ended up being separated from the rest of her siblings: her older brother Victor was sent to a state school before joining the New York State Guard; her youngest sisters Millie and Betty remained together in foster homes before being adopted by the same family; and her eldest brother Ira wound up in the Willowbrook State School, one of the biggest state-run institutions for people with mental disabilities. Bernice, too, would wind up in the Willowbrook State School (no sign of how long she spent there) before its forced closure, brought on by the signing of the Willowbrook Consent Decree in 1975 which committed New York State to improve community placement and conditions for thousands of people with disabilities.
By the time we met Bernice for the first time, she was already living comfortably in her own colorful and very well decorated apartment, with personal prized items echoing back to the mid-century. Every now and then, she often recalled moments from her time at the Willowbrook State School where she mentioned she had very little control or say over common, everyday routines (i.e. taking a shower, going for a walk, etc). To her staff and those who developed a unique relationship with her over time, she often revealed more intricate details about what she had to endure, alone and away from her family.
In the Spring of 2017, Stefanie Cacciotti, one of our Community Habilitation Managers, began a spontaneous and intensive research into her own family’s history. After several hours of browsing, what she found was nothing short of groundbreaking, but the discovery was not about her family. Stefanie had discovered an article written in the Sun Sentinel in August 2000 about two siblings who managed to reunite after an astounding 45 years of separation. Those siblings were Betty and Victor Cublinski—now confirmed as Bernice’s very own brother and sister. At the time, Stefanie was working closely with a number of people receiving supports, however, she was familiar enough with Bernice’s story to want to look for further proof that the siblings in the article were, in fact, related to Bernice. She would quickly put her own personal research on hold in an attempt to find any information that would confirm legitimacy and potentially open up a dialogue. After some digging, she came across Betty’s address, and with the permission to reach out granted by Bernice, Stefanie made the first contact by mailing out an introductory letter. A few days would pass before Betty would respond to the letter and get to speak to Bernice for the first time in decades. It was clear that the separation from her loved ones had weighed heavily on Bernice for so many years. “I have always felt like I was alone in this world with no family, and now I have my sister,” she shared as tears rolled down her face moments after hearing her sister’s voice over the phone. A few months later, in June 2017, after several conversations and scheduled arrangements, Bernice would get to meet both of her long lost sisters Betty and Millie (along with their families) for the first time in over 70 years. Needless to say it was a moment ripe with an endless outpour of emotion.
“That day was, by far, one of my best days at PCCS. To be able to reunite siblings who didn’t think they would ever see each other again, and to help someone actualize a dream that they thought was impossible—that is why we do the work we do”, says Stefanie.
In the months that followed, long after Betty, Millie and their families returned to their homes in Florida, Bernice continued to keep in touch with her sisters, communicating and reawakening memories years old in an attempt to get further reacquainted, just like Betty and their brother Victor must have experienced nearly eighteen years ago when they reunited. While Bernice was without her family for most of her life, over the years she gained a support system and a family in the people who had the privilege of knowing her personally or working directly with her. Strangers quickly became friends and people who supported her became reliable companions who were as concerned about her well-being as they were with the well-being of those in their very own family.
A few months ago, in February 2018, a neighbor found Bernice laying on the floor of the hallway leading to her apartment. She had collapsed and was later admitted into a local hospital where she was diagnosed, shockingly, with stage 4 pancreatic cancer. For a few weeks, she received ongoing treatment and remained very optimistic about getting well; redecorating her home was one of he things she had been anticipating as soon as she was able to get back on her feet. Unfortunately, on March 18, 2018, less than a month later, Bernice quietly passed away.
We could not be more grateful to Bernice to have chosen us to be her support and family unit when she needed it. And we couldn’t possibly be luckier to have been able to bring such happiness and a sense of relief to her life by reuniting her (at 89 years old) with her long lost sisters. That, in itself, is a testament to the power of love and family and what is possible when a community of people are committed to supporting one another.
This Willowbrook Consent Decree Day, we are reminded of the work that began over 40 years ago to improve community placement and inclusion for people with disabilities. That work continues today and remains important now more than ever as people with disabilities face more and more barriers across the communities they live in and interact with on a daily basis.
You can help us make a real difference. Donate now and be a part of the work we are doing to expand the opportunities available to people with disabilities.
In memory of Bernice Cublinsky. [1927 – 2018].
For the Mothers
For the mothers, young and old, whom we serve.
For the mothers who give their time to support our mission as advocates, allies and spokespersons.
For mothers who dedicate hours of service and support, out in the field or from behind a desk.
And for the mothers who believe in our ability to provide the best supports to their sons, daughters, family and friends.
We want to say thank you, and happy Mother’s Day!
Advocacy Done Wrong
Autism Isn’t As Silent As You May Think
Always Unique, Totally Intelligent, Sometimes Mysterious is a common acronym of the Autism Speaks awareness campaign, but it’s superficial at best.
You might be asking yourself “Why? Isn’t it true?” It’s superficial because it was invented by parents, not Autistic people.
Autism Spectrum Disorder is defined by the Merriam-Webster Dictionary as ‘of a group developmental disorders (such as autism and Asperger’s syndrome) marked by impairments in the ability to communicate and interact socially and by the presence of repetitive behaviors or restricted interests’.
Today’s society seems to bear two definitions of the communicative disorder—the immature Internet meaning that relates it to “stupidity” and the sympathetic definition of “Oh, your child has Autism; let’s put him/her in special education.”
I’m here to debunk both. The first definition is just plain un-informed. Nearly everywhere on social media someone has a picture of themselves they don’t like. The caption to that photo—”I look Austistic”. Don’t assume Autistic people are unintelligent because many cannot speak—In fact, some have even graduated high school. Take a look at Nicholas D’Amora, 20, of Staten Island. He does not communicate with words, but according to his mother Barbara Pandolfi he will be a high school graduate by the end of June 2018.
“He knows he’s different, but that doesn’t stop him from challenging what society throws at him”, said Pandolfi.
I could go on endlessly about cases very similar to D’Amora’s, but just because he will be a high school graduate, doesn’t change the fact that he was in special education for most of his life.
Society seems to see Autistic people the same way it sees a fine China cabinet—Fragile, dependent on somebody else, and helpless if they fall.
Autism awareness campaigns are run by parents of Autistic people and their doctors, it seems, and they think they know exactly how their child is feeling, but they don’t.
Imagine there was a protest for LGBTQ+ rights, but a straight person was in charge of it. People of that community wouldn’t approve of someone advocating for them that doesn’t experience what they do, would they? Probably not. So why should Autism campaigns be run by non-Autistic people?
Bottom line—If Autistic kids are going to live somewhat-normal lives, why not let them interact with normal children in general education?
I kept ranting about Autistic people running their own awareness campaigns, and you might be wondering two things at this point—What Autistic person is capable of running an awareness campaign, and who am I to have even written this article; R.J. Calamito, you aren’t Autistic.
The answer to both questions is the same—Like I said before, don’t assume what you don’t know.
My name is Raymond Joseph Calamito, and I am diagnosed with Autism Spectrum Disorder.
In other words—Yes, R.J. Calamito is Autistic after all.
R.J. Calamito is a contributing writer at Person Centered Care Services and a Junior Editor at The John Jay Sentinel.
Disability Pride Parade: A Recap
“Unless someone like you cares a whole awful lot, nothing is going to get better.”
We were more than excited to join hundreds of other New Yorkers at this year’s Disability Pride parade advocating for inclusion, acceptance of human diversity, and promoting visibility of people with disabilities. Our staff members and people we serve were front and center, rallying hand in hand showing that together we can accomplish so much more than we could ever imagine.
Events like this is where allyship and advocacy begins, and we are always thrilled to be present in the community, bringing attention to the issues that need solutions and making connections with people who want to be a part of the work we do on behalf of those we serve.
Missed the event but want to learn how you and/or your employer can become an ally to people with disabilities? Visit our Disability Ally Initiative page to learn more.
by Alyssa D’Agosto
The season of giving is upon us. For those that don’t know, #GivingTuesday, started in 2012 as a movement that takes place on the first Tuesday after Thanksgiving to spark the Holiday Season of giving and cheer. While the hustle and bustle of the holiday season and buying presents takes over gift-giver’s minds, it’s important to take a moment and think about what exactly the season of giving really means.
We asked people in our agency what giving means to them. While a lot of people had the same general definition, one quote stuck out to us. Gabriella Nuara, Program Manager of our Day Habilitation Program said “Giving means sharing what you have with others, even if that means you’re left with nothing. It means sharing your experience, your knowledge, your success, and your failures. Each day, I try to give my staff the opportunity to be the best they could be. I willingly give my time to listen to their concerns about the day to day or their thoughts about how we can better assist those we support in our program. After hearing their concerns and thoughts, I give them my attention, time, experience, and knowledge, to find solutions, to be proactive, and to assist them in growing in the professional world. At one point, I had mentors here at PCCS to guide me to be a better person and DSP, and because of their guidance and the amount of knowledge they gave me, I was able to get promoted…not once, or twice, but three times! Without them, I would not be where I am today! So now it is time for me to give back!”
With the season upon us, PCCS is actively giving back to the community in a special way. Each year, PCCS runs a holiday drive for over 350 students at PS 373R, the Robert Randall School, by purchasing gifts that each student has specifically asked for. Year after year, the number of children receiving gifts increases due to the great amount of support from our community has increased with each passing year. The look of joy and gratitude on the students’ faces make it worth it to come back every year. Looking for a way to give back on this Giving Tuesday? You could help us reach our goal of $5,000 to buy specifically requested presents for these students and faculty members. Just $10 covers one student, or $150 for a class. Help us spread some holiday cheer this year and donate here- www.pccsny.org/holiday-drive/.
A PCCS Holiday Wish-Traditions
The holiday season is here and we all have our own set of traditions. While the fireplaces are lit, the cookies are baking, and the carols are blasting on every station imaginable, this is a time to reflect on traditions and holiday wishes. At PCCS, our traditions focus on service, support, and equitable opportunities throughout the community. We continue to reflect this time of year and look to grow stronger and impact more persons the next year. We asked members of the PCCS family about their favorite holiday traditions and answers ranged from decorating their Christmas tree with family to cooking elaborate breakfasts holiday meals. No matter what holiday you celebrate this time of year, one thing is certain—the season is all about spreading cheer and giving to those who are in need. We are extremely grateful to our supporters and those who have contributed through money and time throughout the year.
PCCS ran its annual Sensory Santa event with the partnership of the Brielle at Seaview providing us space on December 1st. The event provided families the opportunity to begin their own traditions and share in memories of seeing their children take photos with Santa in a quiet, friendly environment that avoids the hustle and bustle of other entities that might be overwhelming spaces. Feedback from families and children continued to ignite the spirits of the volunteers in the room with seeing the joy that it brought to share in this moment.
In addition to Sensory Santa, PCCS Has another tradition to put smiles on the faces of children at our annual holiday drive, where we donated presents to over 350 students of PS373R and Petrides High School students that were on their holiday wish list. This tradition allows PCCS the opportunity to connect with the community in gathering donations: from family and friends of PCCS. From the businesses that support us every year. And from those continuing to get into the holiday spirit. As this tradition continues, the number of students we are able to provide for continues to grow year after year. It’s safe to say that our tradition is truly to continue to increase our outreach for continued community projects.
With traditions new and old, one thing is true, we hope while you continue in your own traditions, you become a part of our traditions here at PCCS in the new year. We wish you all a happy holiday season!
New Year, New Strategies
This year, we will all aim to make progress in different areas of our lives but it’s important to consider how we will go about it as opposed to simply presenting the idea without a strategy put in place. We’ve all experienced those moments where we have not met some of the resolutions and goals we’ve set for ourselves, and most of the time, the shortcoming is usually related to the lack of planning and accountability on our part. If we are to change the outcome this time around then, we must plan every step of the way, bring others along on our journey for support, encouragement and to hold us true to our goal(s) when we’re falling behind, and understand that real progress takes time and commitment—much like we have come to understand from the person-centered methods we use to support the people and families we serve.
These following steps—taken from our person-centered methods—are sure to guarantee a successful outcome to your resolutions, whatever they may be, this year. We know because we have seen it work, time and time again, in the lives of those we support.
1. Title: Brief Description (example below)
“Narrow Down Your Resolutions to 3 or Less Items”
We know you want to accomplish a lot this year, but what are the most important goals to you right now? Prioritize what is most important to you to achieve within the coming months and year. Write these resolutions out in a clear manner to show three different resolutions that can be seen through measurable action.
2. “Measure Through Action”
In what ways will you be able to tell you have achieved these goals? Write down how it is you will be able to put those resolutions to action. Wanting to be more physically fit? Write down your action to walk a mile 3x a week. And track it! This helps keep you accountable!
3. “Support Goes A Long Way”
Having someone to check in with about your goals is key. Who are the people in life that hold you accountable for your actions? Do you value their opinion and input? Good! Discuss with them what your goals are for the year and show them what your plan is. Having them work on this with you can help to keep you grounded with understanding attainable goals as well as pushing you to achieve more. Creating a half way mark for the year allows you the time to reflect with these persons. Working together to check at a half way point allows time to look at how far you may have come and tweaking the action steps with support. Maybe increasing the goal or adjusting support needed to attain the goal.