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 drieber@stmaryskids.org

www.stmaryskids.org