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Danielle Rieber, ModeratorNancy Speller, ParentLinda 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 familiesNancy and J.J.
Meet our familiesLinda and Shardee
Meet our familiesDimitra and Stephanie
St. Mary’s Healthcare System for Children
Danielle Rieber, LMSW – Director, Patient and Family Services718-281-8952 [email protected]
www.stmaryskids.org