When Childhood Ends

Having a child with developmental disabilities and complex medical and life-limiting conditions can be a challenging experience for families. In addition to the emotional stress of caring for a sick child’s current needs, anxiety is heightened by the constant worry of what to expect as the child continues to grow into adolescence and young adulthood. Many parents in this situation are unaware of available programs and resources and are unprepared for the future.

St. Mary’s Solution

Partnering with New York State Developmental Disabilities Planning Council (DDPC), Parent to Parent of NYS, and The Disability Opportunity Fund (TDOF), St. Mary’s has been instrumental in addressing this issue and helping families navigate programs, understand the options available, and plan for the future of their children.

Today, only a few states in the U.S. have pediatric post-acute care programs that serve children up to the age of 18. The pediatric continuum of care includes specially designed inpatient and home care services that focus on the child’s medical, psychosocial, educational, recreational, and rehabilitation needs. But none are prepared to address the growing need of how to transition this population from childhood to adolescence and young adulthood.

St. Mary’s has offered a number of different workshops that highlight program transitioning, long-term housing solutions, self-advocacy, legislation changes, and financial planning.

As a leader in pediatric post-acute care, St. Mary’s has also identified a viable solution to address this emerging population – medical group homes, also known as a Continuing Life Community. These homelike residences will serve medically complex children, 13 years-of-age and older, who are currently aging out of either inpatient system or community programs. With St. Mary’s impressive track record, a care model has been designed that utilizes our best practices from inpatient and homecare programs. The Continuing Life Community will incorporate an environment that facilitates a high quality of life with an efficient provision of care. The NY program is intended to serve as a model and replicated throughout the country.

Learn more about advocating for children’s issues