Desirie Sykes took a leap of faith during the early pandemic to start this nonprofit that provides resources for mental health and special education for children and adults. Stop & Shop has supported NESS Cares through the Community Bag Program.
Tell us about NESS Cares.
NESS Cares was founded in 2020 in the midst of the pandemic. Originally, we started in 2018 as a behavioral health agency called NESS Behavior Consulting to provide Applied Behavior Therapy for children who have a primary diagnosis of autism or have behavioral challenges that impede their ability to learn. But when the schools closed due to the COVID-19 pandemic, we came to a complete standstill. We had no contact with the children; parents did not want us in their homes.
But the needs of these children still existed. They had individual educational plans (IEP) in place, which every student with a behavioral challenge or a diagnosis in a public school setting has so that they can get special services, but the services were not being provided.
So, during the pandemic, I developed NESS Cares. We started by putting together COVID care packages for these children. The packages were filled with sensory items designed to stimulate the five senses (sight, sound, touch, smell and taste), which is particularly important for a child with autism. We just started sending them out to former students and anyone who requested one at no charge.
The response we received was extraordinary. Children were excited to receive the package not only for the contents but also to see that they had not been forgotten. We then started tailoring the contents for the season of the year.
I learned very quickly that you need support; without it, we couldn’t maintain sending out these boxes at no cost. So, we are revamping the program into sensory bags. The bags we found are much more functional and can be repurposed. This change will allow sensory items to be carried in different settings and provide more functionality for families.
We also found that a mental health crisis was developing during the pandemic. People who were depressed didn’t realize they were depressed. They found themselves limited to staying inside; the familiar structure of their lives disappeared; their schedule changed; they were forced to stay inside and deal with themselves. And not everyone is equipped to do that.
Mental health awareness is so important, as is getting access to the appropriate services. What prevents people from accessing services is one, they don’t know they exist, and two, they might not have the financial means. So, we are launching a program called Co-Pay Assistance, where we can give the community some financial assistance to meet their co-pays and receive either behavioral health services or mental health services, in addition to just empowering the community by sharing resources.
We are also in the process of establishing the witNESS Growth program, or Therapy House. Classrooms and therapeutic offices are specially designed for ease of learning and skills practice, but many children don’t have access to these spaces. This is particularly true for students who need to use services through the school districts or children who need to travel to several different specialists.
NESS Cares will provide a space to accommodate IEP goals in a mobile therapy classroom to meet students where they are.
Our slogan is “Sharing Resources is How We Grow.” We’re still in our infancy and still learning. People’s needs change all the time, but the mission of our nonprofit is to provide resources for mental health and special education for children and adults.
People’s needs change all the time, but the mission of our nonprofit is to provide resources for mental health and special education for children and adults.
What sets you apart from other nonprofits in your community?
NESS is really special to me because of my devotion and compassion for the special education community. But I also went through my own mental health crisis, and I had to learn what it means to be mentally fit in that process. I was crying out for help, and there was no one in a position to help me. I encountered people who did not have the capacity, even professionals, who, in my opinion, did not care. I don’t want anyone else to experience that. Hence the name NESS Cares because here we truly do care.
Young adults today have new challenges and new concerns that they’re going to have to face and overcome. They need tools to navigate those and remain mentally fit. I put together a book, actually a workbook, called Who Do You Think You Are, and it goes through the steps that I used to identify who I wanted to be and how I was going to get there. The book is self-published on Amazon.
We’re in the process of developing a six-week workshop using this workbook to help young adults figure out who they are in this world and to make a commitment to themselves. It’s really personalized: who do you want to be, and what are the realistic steps of getting there?
We also offer therapy for children who have a primary diagnosis of autism, and we offer parent training. I’m in their homes, so I have a close-knit relationship with the community. I understand their concerns and the effects of the school closures. We’re still seeing those effects, both in the home and in the schools, as they have reopened.
Tell us a story that illustrates the good work of your organization.
NESS Cares evolved from something that should have taken us down, the COVID pandemic. I was in a position where I did not have funding, but I had compassion. I put everything that I had in the midst of a pandemic to give back to a community that was in need through the COVID care boxes. The spirit of giving embodies who we are at NESS Cares and the team that works with us.
We want to build up your capacity to advocate for yourself and understand that resources are available to you and how you can access them for yourself and your children. If you don’t know what resources are available, you can’t get the help you need, whether for yourself or your child.
What is your most outstanding achievement or contribution to the community?
When I started out, I had absolutely no idea how to run a nonprofit or a business. I just knew that there was a need. I wanted to set myself apart from an organization that is so large and has so many clients that compassion becomes lost. I want you to leave our meeting with the tools to know what to do when I’m not there. Or, if you’re walking into a meeting to discuss your child’s goals for the upcoming school year, I want you to understand what you’re receiving and what the impact will be on your child.
I believe I have left an impact on everyone I have encountered thus far, whether through a conversation or a resource I provided; they did not leave me the way they met me, and I take great honor in that.
What do you want people to know about your organization?
The most important thing I want people to know about NESS Cares is how we grew out of my own mental health crises. I have been able to take from that experience and give back what I learned to a community that is truly in need.
So many people in need don’t even know they are in need. We really need to be one community. If we bring back compassion, especially when we are so divisive today, there’s so much that we can learn from each other.
We really need to be one community. If we bring back compassion, especially when we are so divisive today, there’s so much that we can learn from each other.
How will you use the funds raised from the Stop & Shop Community Bag Program?
We are so thankful for Stop & Shop just for getting your attention, and you have been extremely supportive. We’re so thankful for this platform. The funds from Stop & Shop will go towards relaunching the sensory box initiative as the sensory bag initiative, which is our first program priority.
Then we’ll implement the Co-Pay Program and Therapy House.
Is there anything you’d like to add?
I would like people to remember that we are a brand-new nonprofit, still in our infancy and growing. We appreciate all the feedback that we can get. You can visit our website at https://www.nesscares.org/ to learn more about us.
Published December 15, 2022.