Danielle Rieber, Moderator Nancy Speller, Parent Linda Amisial, Parent Dimitra Cilento, Parent Parent Panel Young Adults With Medical Complexity

St. Mary’s – “Who Are We”? 97 bed, DOH Skilled Nursing Facility Medically complex, pediatric residents Most of the residents are cognitively low functioning with significant developmental disabilities Specializing in post-acute rehab Mix of both long- and short-term residents Community-based programs Diverse population Operates using a Patient and Family Centered (PFCC) approach

What do these women have in common? All moms (and advocates for this population) Has a young adult known to, and cared for, by St. Mary’s Has a young adult with a life long medically complex condition Has experienced the term “Transition Planning”

What does it mean to be medically complex child/young adult? Different than children with Special Healthcare Needs (CSHCN) Long-term healthcare needs Require skilled nursing around the clock care Require technology, intensive, multidisciplinary care Complicated! Requires, service coordination, quality care, and as the child ages – transition planning

Transition Planning? Children with complex medical needs are living longer, often into adulthood, due to improved medical technology “Aging out” of a pediatric setting - either inpatient or community May be too complicated to be cared for at home for a variety of reasons: Overwhelmed by intensive, technology dependent care. Limited resources – financial and clinical Psychosocial situations Aging parents

What are the residential options for families? DOH Geriatric, Nursing Home Institutionalized Most restrictive Lack of age appropriate programming Tend to be “system focused” Most are able to handle the medical/skilled needs OPWDD Group home Setting More home like Less restrictive Age appropriate Resident focused Most are unable to handle the medical/skilled needs

What are the Barriers for a smooth transition? Residential Long term resident at St. Mary’s Starting planning too late Inadequate number of least restrictive, age appropriate, medically complex group homes Community/Home Lack of “informal” supports/participation Housing, equipment Financial Custodial issues (ACS/Foster Care)

Focus Groups – What’s important to families ? Around the clock nursing care Quality Care Medical coverage and involvement Home like environment Age appropriate activities Safety Close to an ACF with a PICU

Meet our families Nancy and J.J.

Meet our families Linda and Shardee

Meet our families Dimitra and Stephanie

St. Mary’s Healthcare System for Children Danielle Rieber, LMSW – Director, Patient and Family Services