Posted on November 24, 2025
By Karen Cunnningham, Penn-Mar Sibling
Karen Cunningham stands with her husband and two sons, while Brenda sits on a chair in front of them.
My older sister Brenda has been an inspiration to me all my life. She was born with an intellectual and developmental disability (IDD) and, while people who don’t know her sometimes have a hard time understanding her, she is amazingly outgoing and has a silly sense of humor once you get to know her.
I watched my parents navigate many challenges related to her education and wellbeing, always with the understanding that I would one day take their place as Brenda’s guardian when they were no longer with us.
Inspired and shaped by my relationship with my sister, when the time came to choose a career, I followed my heart and became a special educator to support individuals and families regardless of their abilities.
After my mother passed, my father cared for Brenda with our family’s support. As his health declined, I made the decision to move Brenda to our home in Pennsylvania to live with my husband, Andy, and our two teen sons. This served as an initiation period for all of us until my dad passed away two years later.
Although I had anticipated this moment and integrated Brenda into our family routines for several years, it was nonetheless a bit of a shock when, a decade ago, I became fully responsible for her care.
That first summer I was immersed in the legal requirements of moving Brenda’s guardianship from Maryland to Pennsylvania, settling into a new home, and looking for appropriate community resources where Brenda could spend meaningful days while my husband and I were at work.
I first heard about Penn-Mar Human Services at the Irish Festival in Shrewsbury. With my special education background, I was impressed with what I learned.
Brenda soon became an enthusiastic participant in the organization’s Day Program at Far Hills where she works on art projects, explores all over Southern York County, and socializes with her friends and DSPs.
For a while, all was going well with our new arrangement — until it wasn’t.
Things got challenging when Brenda required major surgery after breaking her femur due to severe osteoporosis and medical complications. Years later, she broke her femur for the second time.
Penn-Mar team members consistently visited and offered support throughout her hospitalizations, further demonstrating the organization’s commitment to her well-being.
Even with so much support, these physical crises with my sister made me feel like I was alone on an island. I reached out to Penn-Mar for help, and they connected me to Claudia Summerson, a Penn-Mar parent who invited me to dinner, listened to my story, and shared her family’s situation.
She suggested I get more engaged with Penn-Mar and meet other families experiencing similar issues to help fill the void of connection and community.
I took Claudia’s advice and joined Penn-Mar’s Family Connections Council, an initiative that connects new families with a member of the Council, offering a consistent point of contact and a welcoming presence to those beginning their journey with Penn-Mar.
We meet virtually a few times a year to talk about ways we can promote and support Penn-Mar and their families. Members can join a peer support or discussion group; serve on the Family Connections Council; share their stories to inspire others; or participate in volunteer, fundraising, or advocacy work. We all have different skills and expertise to contribute that help cater to the individual needs and schedules of each family.
It’s important for siblings to engage with the Council to show other families that they’re not alone — we’re here to support each other. Not to mention, you will also learn about events and opportunities that will benefit you and your loved ones.
When I need help with my guardianship responsibilities, I know I can count on Penn-Mar to connect me to the right person or resource. And with my special education background and years of experience as Brenda’s guardian, I know I can be a valuable resource to other family members. If we all come together as family members, we will only become stronger in our resources and sense of community and connection. We hope you will consider joining our Family Connections Council.
To learn more about The Family Connections Council, contact Tina Chan-Sweenie at tinachansweenie@penn-mar.org.
We would like to learn about additional family resources we can provide. Your voice matters deeply and will help guide the future of Penn-Mar Human Services’ family support efforts. Please visit the link below to complete a short survey that will help us to address your needs.