Penn-Mar Was the Shining Beacon of Light for Lisa’s Long-Term Care

Lisa Hilbert with her parents Robert and Barbara Hilbert.

Lisa is the youngest of five children raised by our loving and devoted parents, Robert and Barbara Hilbert. As a 14-year-old boy, I vividly remember the joy of Lisa’s birth. Everyone was drawn to her calm personality and endless smiles. But amongst the joy, our mother sensed that Lisa’s language and motor skills were developing more slowly than she had seen from her other children. Her maternal instincts were initially dismissed by our family doctor, but Mom and her concerns persisted. By the time Lisa was about two years old, our parents insisted that Lisa undergo testing at the childhood development center within the Kennedy Kreiger Institute in Baltimore. Lisa’s doctors concluded she had severe and profound intellectual disabilities. 

None of us knew what those words meant or foretold. Thankfully, our parents cut through that uncertainty when they calmly and confidently said we will continue giving Lisa the same care and affection we had always shown. They encouraged us to include her in our daily lives so that she would have every opportunity to gain new skills and enjoy life in her own special way.

Always happy and easygoing, Lisa has an uncanny ability to draw people into her world despite having a vocabulary of about 20 words. Her favorite activity is having children’s books read to her. Dr. Suess’ ABC and Eastman’s The Best Nest are among her favorites, so much so that my siblings and I can recite from memory every rhyme and verse in those books.    

Lisa continued to live with our parents until she was about 35 years old. She kept them young at heart, bringing joy and purpose to their lives. But as our parents reached their early seventies, they had to confront their biggest fear… who will take care of Lisa when they could not. We visited a number of care organizations in 2003 before learning of Penn-Mar from a social worker at Kennedy-Kreiger. Our first visit convinced us that Penn-Mar was the shining beacon of light for Lisa’s long-term care.  Lisa moved to Penn-Mar in June 2004. Since then, our family has come to appreciate the amazing Penn-Mar community whose mission is to provide the best possible care for people with disabilities so they can, in Penn-Mar’s words, “live their best life”. Thanks to Penn-Mar, Lisa is doing exactly that!

My personal interests in helping Penn-Mar began when my brother and I became Lisa’s guardians following our father’s passing in early 2020. In retrospect, there were three pivotal events that motivated me to share my skills and resources in support of Penn-Mar’s mission. First, being Lisa’s guardian afforded me the opportunity to interact more fully with support professionals who help Lisa. They treated Lisa as if she was one of their own children. If they can do that for Lisa, surely, I could find a way to help them. 

Second, although my parents were of modest means, they opted for a substantially reduced pension that would continue to make monthly payments to a beneficiary after my parents passed away. My parents instructed the beneficiary to transfers the monthly payments to Penn-Mar. I am humbled by my parent’s generosity, and I wanted to honor the sacrifices and values they lived.    

Finally, I had the privilege of meeting Elizabeth Pitts-Madonna, Penn-Mar’s Foundation Vice Chair, whose family established the Michael James Pitts Endowment. The Pitts family’s journey to advance the careers of support professionals encouraged me and my spouse, Jan Casadei, to further our commitment to Penn-Mar and the Pitts Endowment.

More recently, I’ve volunteered to help Penn-Mar’s Development, Volunteer, and Donor Engagement team headed by Ms. Tina Chan-Sweenie. The team has partnered with the Penn-Mar Advocacy Coalition (PMAC), to advocate for increases in state funding to make Direct Support Professional salaries commensurate with the sophisticated skill set required to give disabled people the quality life they deserve. 

To those who may read this blog, I encourage you to become involved with Penn-Mar in every way you can. Your help will keep Penn-Mar’s shining beacon of light alive for disabled people and their families. My family will be forever grateful for the founders and many donors who have kept that light shining for us.