In the heart of Pennsylvania, a mother found herself in a dire situation. With three daughters, all with developmental disabilities, she was trapped in a cycle of domestic violence and homelessness. Her two younger daughters were placed in a pediatric care facility, while she and her eldest daughter sought refuge in a homeless shelter.
KenCrest’s Lifesharing team were contacted about their situation and immediately acted. All of the girls had complex needs, but only one of them qualified as medically complex. The two youngest girls had complex medical needs while the oldest, adult daugher had an intellectual disability with mental health issues.
Kathy Trumbore, the Director of Lifesharing, knew she had to help this family remain together. An innovative service provided hope for a solution: Medically Fragile Lifesharing, a program that is the first of its kind in Pennsylvania.
The first step was to secure a safe and stable home for the mother and her eldest daughter. With the support of the Office of Developmental Programs (ODP), KenCrest was able to provide a home that met the family's needs. This was no small feat, as it required special approval from the Deputy Secretary of ODP and a lot of maneuvering and manpower from KenCrest.
Once the mother and her eldest daughter were settled, the focus shifted to reuniting the entire family. The two younger daughters, who had been in the pediatric care facility, were gradually brought back home. The transition was carefully managed, ensuring that the girls received the medical care and support they needed. "The girls have blossomed since coming home," Kathy shares. "They're in school, and the oldest started high school this past year. Mom is doing well despite a few bumps in the road."
Expanding the Program
KenCrest's Medically Fragile Lifesharing program is a pioneering initiative in Pennsylvania. As the first organization in the state to be approved for this service, KenCrest is leading the way in providing home-based care for children with complex medical needs. The program aims to move children out of institutional care and back home with their families or to a host home.
The success of the first family has paved the way for others. Recently, a four-year-old girl with medical complexities joined the program, supported by her parents.
The program's impact extends beyond the immediate families. It offers a lifeline to parents who might otherwise struggle to balance work and caregiving responsibilities. "Our life-sharing providers are paid a stipend," Kathy explains. “This allows parents to reduce their work hours or even quit their jobs to care for their children without fearing losing their income."
The Importance of Medically Fragile Lifesharing
KenCrest's Medically Fragile Lifesharing program is more than just a service; it's a lifeline for families in need. "No kid deserves to grow up in an institution," Kathy emphasizes. "For the kids who have gone home, we've seen fewer hospitalizations, fewer illnesses, and significant growth. These kids have blossomed."
The program also addresses a critical gap in the care system. Many agencies are hesitant to take on the responsibility due to concerns about liability and the complexities of nursing care. However, KenCrest is committed to expanding this program and reaching more families. "We're one of the few agencies in the southeast region that has been the go-to for referrals," Kathy says proudly.
As KenCrest continues to expand its Medically Fragile Lifesharing program, the goal remains clear: to provide support for complex children while allowing them to come home and live in a loving, supportive environment surrounded by their family. Whether it's reuniting families or recruiting new Lifesharing providers, the focus is always on the physical, mental, and emotional well-being of the children.
"We're hoping to do more work with our transition homes to get kids home and have Lifesharing be an option," Kathy shares. "It's the next best thing to going home with mom and dad."
KenCrest's Medically Fragile Lifesharing program is a testament to the power of community, compassion, and commitment. It's a story of hope, resilience, and the unwavering belief that every child deserves a loving home.