Karen Zandi

Karen Zandi

President & CEO of The Mary Cariola Children’s Center

For nearly 70 years, Mary Cariola Children’s Center in Rochester, New York has been dedicated to educating and caring for children, youth and young adults with multiple disabilities and complex medical conditions.

DRG Search worked with Mary Cariola’s Children Center in 2012 to identify a leader with experience in the disability, children and family sector; who would ensure a successful transition of leadership, after its longtime former president Paul Scott announced his retirement; as a result of this work, Ms. Karen Zandi was chosen as the President and CEO who would lead the independent non-profit agency, bringing it to the next level of excellence.

[In talking about her passion of working with children and families] Zandi said, “I’ve committed myself and my career to learning more about kids and how they learn and grow in an environment of trust.”

In this interview, Zandi discusses her leadership style, the increasing populations of children with special needs, the importance of comprehensive assessment, and how she is positioning Mary Cariola Children’s Center for future growth.

What are some core principles and values that guide your work and define your approach to leadership?

 My philosophy and leadership style has been “servant leadership.” What I’ve continued to experience is how important it is to ensure one’s behavior is consistent with values, and clarify those values throughout the organization. The values we have instilled at Cariola—trust, integrity, quality, and respect— have a list of behaviors attached to each one, which ensures we are demonstrating and holding one another accountable. I’ve come to understand that people are always observing— especially in leadership roles—and transparency and integrity in my words and actions are paramount and critical in developing trust.

What are some trends that you’re seeing in disability services (and how does it inform your work)?

Cariola has grown and shifted over the years in response to on-going and increased needs of the population.  We have always been known in the community for the most complex children and that has not changed, nor has our willingness to work with children who are very high need, many of whom have not been accepted for services at other organizations. 

In school, we are seeing more children who are home and have no program— other than in-home instruction. This includes an increase in children who are blind, visually impaired and deaf/blind.  The staff members at our center who work with these children are among the most innovative and creative with their interventions.

Another trend we are experiencing is the challenge families are facing with children who have exceptionally high-risk behavior.  The resources to help them are limited and not as readily available as they need to be. The services of the school and our Community Services (group homes, and in-home supports) have needed to be better coordinated for consistency of intervention.  We recently had to create more options to support families, provide more teaching to them, and ensure all the families have active, engaged social workers to help them when there are gaps in services.

In 2017, Cariola launched a new therapeutic respite program for kids with severe behavioral issues. What makes the program unique and how is it helping to lead the nonprofit into the future?

The staff serving children in our group homes created a model that they felt would be the best way to support families with a sustainable behavior plan and still provide them some out of home respite services.

The program first engages the family in their home, assesses the youth behavior with a Functional Behavior Assessment, provides a behavior plan and implements this in their home.  Families then have an option for their child to be out-of-home and in our group home for one week.  During that week the child would be engaged with peers in activities, and the behavior plan adjusted if needed.  The same team is providing the in-home services after the week respite.  Having consistent staff who work with the family is key to understanding their specific needs, and supporting the interventions. This is an innovative service, designed by staff as a result of truly listening and understanding family needs.

How do assessments, one on one communication, and feedback from families help you to improve the organization’s services?

We implement a family satisfaction survey, which has been informative with respect to overall feedback on services, buildings, and communication, but also for specific areas for improvement.  The first year after I arrived, one area mentioned by several families was “breakfast/lunch.” Since families had always sent in lunches for their children, our staff had been concerned about nutrition for kids and families who were living in poverty. They urged me to explore providing this service.  It was one of the first big “wins” in improving our school services.  Families were pleased, kids were eating better, and staff saw significant improvement in behaviors.

Another survey was distributed to families being served through the New York State Office for People With Developmental Disabilities (OPWDD).  These families struggle with their children who have high-risk behaviors along with autism.  The survey was extensive and highlighted the level of struggles for some of these families.  While we were aware, the striking comments (both in severity and numbers) spurred us further to implement the therapeutic respite and behavior service.  It has been very impactful for families who have been engaged in the program.

Additionally we’ve refined both the philosophy and implementation of partnerships in the community.  Rochester is a city which is in tune with the individuals and families we serve so research, communication and collaboration makes the community stronger.

As the CEO of a longstanding organization like Cariola, how you do balance the sector’s growing demand for change with the need to preserve the organization’s history and what made it successful in the past?

It may seem simple, but one of the things I did early on was put a huge sheet of paper across the wall of my office. I needed a timeline to understand and absorb the organization’s history.  There were milestones/years across the top, which also reflected what was happening with state or federal legislation for people with disabilities.  Recognizing the external legislative and social impact was helpful in understanding what may have impacted the organization’s growth and service to people with disabilities.  I also visited some of the original documents/charter of the organization, which was amazing as the basic philosophy is true today.  Consistency of the mission to support families raising their kids is important.  It was Mary Cariola’s mission at a time when many people were being told to put their kids in institutions!

Having a good relationship with my predecessor was also important to me.  He had been there a long time and had strong relationships with staff and donors.  Donors need to feel their interests are honored through these transitions.  The staff also had perspectives on what is good and not good about prior managers and leaders. It’s important to understand that in engaging people in a new direction.