Transition Toolkit for Parents of Medically Fragile Children

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. Many parents in this situation are unaware of available programs and resources and are unprepared for the future.

St. Mary’s Healthcare System for Children, a national leader in post-acute care for children with special needs, believes family advocacy skills are critical for survival when caring for a medically fragile child.

The Transition toolkit is intended to assist parents and guardians of medically fragile children and adolescents in navigating programs, understanding the options available, and planning for the future of their children. Some Topics include;

• long-term housing solutions

• self-advocacy

• legislation changes

• financial planning

• Programs/activities that encourage growth and contribution to the community

• Overall good health