State of The Arc - Presented by Board President Helen Pietranczyk at the 2020 Virtual Annual Meeting
Good evening everyone, and thank you for being here tonight.
We are all experiencing unprecedented health, safety and economic concerns. It would be easy for me to focus on what The Arc is experiencing, and what they are doing, in response to COVID-19, because it is the here, and the now. And I promise I will address that response, because it is critically important.
But I don’t want to ignore what’s been accomplished prior to March of this year. I want to acknowledge all the great work of all the staff, from the beginning of our fiscal year, July 2019.
Advocacy is the heart and soul of this organization, accomplished in many different ways, by all the staff, whether they have the title of “advocate” or not.
I’d like to start by talking about Linda Poscik, our office manager, who joined The Arc last summer, and quickly jumped in to support the entire team. Her organization skills are now legendary, and folks on the staff team, especially Lori, indicate that they don’t quite know how they did this work without her. Her administrative support allows the rest of staff to focus on the critical work of advocacy.
Next, let’s talk about Communications and Outreach. This small but mighty team of two, Valerie Smith and Brent Belisle, work hard to get in front of as many people out in the community, such as law enforcement, to showcase the abilities, not disabilities, of those we serve, and to share how much we are all alike, vs different. They talk about the challenges too, so that those they are speaking with get a better understanding of the lives of individuals with IDD.
Last summer, they started a program, called Teen LifeAbility, an opportunity for teens to come together and focus on aspects of life that they wanted to explore, such as music and travel. There was a general theme of superheroes, and through this program, were able to see themselves as the superheroes they are.
Self-advocates also took to the streets of Belmar to ask questions of folks passing by regarding what they knew about individuals with IDD.
There were many new and different creative ways that this team utilized to showcase the many gifts of those we serve.
Communication is critical, in all its many forms, and frequently is in the form of telling the stories of those we serve. Stories draw the reader into the successes and challenges of individuals with IDD. We took communication to the next level this past year, escalating the frequency and the quality of social media posts, as well as through our weekly newsletters. Panels of self-advocates discussed various aspects of their lives on a Facebook Live forum, including the challenges and the successes…another form of communication. This particular forum was spearheaded by the Communications and Outreach team. The Story Teller hired last year did a great job with all of this. She has since moved on to another opportunity, so Valerie and Brent are, at least temporarily, fulfilling this function.
Our Development Director, Jennifer Holan, has the awesome responsibility of combining the aspects of advocacy, communication and outreach to source contributions from the community, both corporate and individual contributions. The Summit of Hope, held in October last year, continued the historically successful way of sharing our mission and vision and raising money for the organization.
A frightening, but unfortunately familiar story was told that starkly portrayed one of the many dangers faced by individuals with IDD. The situation, a kidnapping of an adult woman with IDD, was handicapped by law enforcement jurisdiction and lack of communication among agencies, among other things. The Arc played a major role in pulling all the pieces together. The woman was eventually located and rescued.
The story was received with mixed reviews; however, comments afterwards ranged from “I had no idea”, “Thank you for shining a light on this issue”, “It was uncomfortable to hear, but had to be shared”.
68% of our guests made a gift, and over $75,000 dollars was raised.
While the Summit of Hope may be the largest and most visible of our fundraising efforts, it is not the only thing she does! Jen works with the Board to identify opportunities within our networks; she develops mini campaigns directed at specific goals (such as the one that raised enough funding to pilot the Teen LifeAbility program last year) as well as our current campaign to fund the replacement of the vacant staff positions (more on that in a minute).
Eryn Hoerig manages the database that maintains the records of all those who support The Arc, as well as the database (a different one!) that the advocates use. Both are critical to our success. She also is our Zoom expert, and she continues to explore all that Zoom, and other technologies, have to offer in order to facilitate The Arc’s work. Thank you, Eryn, for managing this meeting tonight!
And now a word…or two…about the advocacy team.
Adult advocates work with individuals who are over the age of 18, and their families. Transition out of high school to whatever is next, be it job readiness, work, relationships, or a new and different living arrangement, is challenging. Then there are the sometimes-daunting responsibilities of being independent in this world today. There are also many areas of crisis that our advocates jump into, helping to solve problems, identify alternatives, and support the decisions that these individuals make. Crises that include homelessness, gaps in services, and medical emergencies, are the norm, not the exception, at The Arc. Here’s a story of a recent situation:
One of our Adult Advocates supported a person to access necessary services and supports through the process of surviving a violent crime. This person was supported to exercise their legal and civil rights, to understand and evaluate options available to them through one of the waivers, and to access immediate residential supports. Our advocate attended multiple court hearings and interdisciplinary meetings; supported this person to exercise their rights as a survivor of a crime; and connected them to partnering organizations that specialize in trauma-informed legal and criminal issues. She worked collaboratively with partnering professionals, and reached out to law enforcement officers to promote better outcomes for this person.
The Adult Advocacy team of Jeanne Weiss, Jilda Falco and Breanna Fetters…yes, just three right now…are incredibly experienced and knowledgeable, and have both passion and compassion for the individuals and families they serve.
The Education and Family team, currently Patricia Fulton and Sally Carruthers, are a mighty duo, supporting children and their families. While some of their work is helping families learn the skills to be their own advocates, here’s a story where that wasn’t all that was needed.
The Education and Family team of two fulltime and one part time advocate (that was the staff size at the time of this story), supported six families of students with high needs who were not able to start school at the beginning of the year. The various issues included lack of school staffing, lack of appropriate placements in outside facilities for students with high needs, transportation issues, and the absence of follow through for monitoring these situations. As of December, and I’d like to point out that the school year starts in August, these students were finally, all in school. It took months to make this all happen, and severely impacted the continuing education of these students.
There are hundreds of stories like these; I wish there was more time to share them with you. The bottom line is that advocacy is often times complicated, complex, and always time consuming. The advocates work very hard to resolve situations in a way that has a positive impact on the individual and their family. Because of the way the external systems are designed, it almost always takes longer than anyone would want.
Which leads me to talk about another opportunity that The Arc has been involved in for over a year: Porchlight. Those of you who were at the annual meeting last year, heard about it for the first time. This is an all-inclusive location for victims of abuse and exploitation, including individuals with IDD. The Arc has been involved in this project since the beginning, and it continues to evolve, with Lori Ropa, our Executive Director, on the Porchlight Board of Directors and co-chairing the Governance Committee, and Arc advocates being asked to join at the appropriate time and manner. Porchlight will address the current situation that requires victims to go to many different locations to report, and then continue the work of healing from the event.
In Lori’s introductory remarks, she used two words to describe the current environment….resilience and resolved. I’d like to add another word…reimagined. That’s what everyone on this team has been doing…reimagining how to accomplish their work, independently and as a team.
We’ve experienced a number of staffing changes in the last 6 months. Corinne Gray, a long- time, dedicated Education and Family advocate, retired in March. Also in March, an adult advocate left to pursue a totally different career. And in May, our story teller also decided to leave to pursue another opportunity. These staffing gaps, along with the health emergency, have created a very difficult situation for The Arc. However, the team has, and continues to pull together to ensure that our essential work goes on, even with the office physically closed. The advocates continue to “meet” with individuals and families, in creative and different ways. Zoom, while the norm for many of us, is not always available due to a lack of internet services and/or a device on which it would be available. They work together to communicate resources for assistance, whether it is medical, legal, or economic. The team stays in constant touch with each other, too, supporting each other in whatever way is necessary.
Last but certainly not least, a word about Lori, our executive director. Crisis management is not a skill that many folks have, and don’t use often, even if they do have it. Lori has demonstrated this skill, with unwavering commitment to both those we serve, as well as the staff. Her leadership, as well as the leadership of the staff, should be recognized as “best in class”.
I’d like to also add a huge thank you to our Board; like the staff, they too have persevered, with committee meetings continuing, and meeting through Zoom for our Board meetings. I know that they too have been impacted by COVID-19, and the resulting changes to life as we used to know it. Thank you for your commitment to The Arc and those we serve!
Thank you all for your time tonight and for your unwavering support of The Arc. I hope you are as proud of the work we’ve done as I am.