Children and young adults with medical fragility are a growing, high need population nationwide. Individuals with medical fragility have a wide range of complex medical conditions which require intensive, ongoing support from multiple specialty providers, and often require continuous skilled nursing care. As children with medical fragility get older, they lose access to specialty pediatric programs and services that they relied upon as children.
At the same time, parents are aging, and caring for a child with intensive medial needs at home becomes more challenging, and sometimes impossible. Yet few services exist, either in the home or in a residential setting, targeted to the medically fragile adult population
Families can do a great job until the child gets to be a certain weight, or age, and they don’t want that child to be the responsibility of other siblings, so they try to figure out what’s next. There’s usually not some major trust fund that’s going to help the family out… It can’t just be the responsibility of these parents. It has to be the rest of us as well.
Few providers are suited to meet both the medical and social/developmental needs of IDD adults with medical fragility; this is particularly true for residential settings.
ICFs/IID are health facilities that provide, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, care coordination, and integration of health or rehabilitative services to help each resident function at
his or her greatest ability. ICFs are designed to provide services and "Active Treatment" to individuals requiring protective and supportive care because of a mental or physical condition or both.
ICF's have gurneys, mechanical lifts, crash carts for medical emergencies and specialized equipment for bathing and for swimming in the campus pools.
Individuals requiring assistance with multiple personal care tasks may benefit from ICFs. These individuals are stable but may require daily, if not 24-hour, on-site nursing supervision.
Why Did Tyler Bryant Die? The State Must Answer
Tyler Bryant, 23, of Amherst County, lived practically all of his life at Central Virginia Training Center (an ICF), with his twin brother Taylor by his side and his mother Martha watching over them both. The training center (an ICF) had been the twins’ home since 1996 when they were born in 1994 with severe intellectual and physical disabilities that kept them from leading a “normal” life.
On March 16, Tyler died more than a hundred miles and two hours from home. His mother is heartbroken but angry, demanding answers from the state agency that transferred her sons — she would say “forcibly evicted” — from (the ICF) of CVTC.
This tragedy has been building ever since the state announced in 2012 that all but one of its residential training centers (ICFs) would be closing.