Creating Dementia-Inclusive Communities Using a Geriatric Workforce Enhancement Program Framework

The Geriatric Workforce Enhancement Program (GWEP) sponsored by HRSA provides an organizing framework around which dementia inclusive community initiatives can be successfully implemented and sustained. The overarching goal of all GWEPs is to improve outcomes for older adults by promoting evidence-based education that spans the continuum of care. This includes integration of academic, clinical, and community-based providers. By their very nature, all GWEPs partner across agencies throughout the state to deliver interprofessional education that will impact people living with dementia and their caregivers at the community, primary care, and acute care levels. Dementia inclusive community initiatives must have this kind of high-level interagency coordination. Our GWEP has successfully implemented Dementia Friends sessions across multiple sectors (Veterans, EMS, clergy, libraries, developmentally disabled, living alone) both in-person and virtually due to COVID-19. This symposium will share the methods to organize at the community level to deliver a unified message community-wide.

A Study on the Life Experiences of Adolescents Who Grew up with Younger Siblings with Developmental Disabilities: Focusing on Phenomenological Analysis Methods

This study aims to explore specific life experiences and what it means to “live as a sibling of a disabled person”, by focusing on the brothers and sisters of persons with disabilities; this is a cohort that has been relatively marginalized in the field of welfare for the disabled. To this end, the author conducted 1:1 in-depth interviews with four adolescents who grew up with younger siblings who have developmental disabilities, and analyzed the meaning underlying their life experiences through phenomenological research methods. As a result, a total of five core themes of those life experiences were identified: (1) the birth of a disabled younger sibling, wherein their trials began; (2) surviving differentiation within the family; (3) ambivalence toward parents; (4) adolescence, with resurfaced psychological conflicts and relieving emotions; and (5) a future to be planned around a life of coexisting with disabled siblings. This study aims to provide basic data for social welfare intervention through an illuminating and deeper understanding of the lives of siblings of the developmentally disabled who require a high level of care.

Evolving Exhibits: Struggles Over Public Memory in Developing “The Willowbrook Mile”

In 2016, the College of Staten Island held a groundbreaking ceremony for the Willowbrook Mile, a walking path across the campuses of the college and the Office of Persons with Developmental Disabilities’ Institute for Basic Research that would document the history of the notorious Willowbrook School. The Willowbrook School was a state institution for the developmentally disabled that was closed in part because of an expose about the School’s horrific conditions. It took more than a decade for the groundbreaking to occur, and 4 years later, the Mile remains unbuilt. This article traces the development process by examining planning documents and recollections of key participants at the groundbreaking and makes two findings about the development and evolution of memory exhibits. First, the Mile’s slow process reflects that public memory is a contest of identity and difference. Memorializing Willowbrook pits vernacular memory of activists and laypeople committed to social justice for the developmentally disabled against an official public memory that deflects attention away from the state’s role in maintaining the Willowbrook School. Second, the competition between official and vernacular memory led to a both-and compromise where official and vernacular memory appear equally. This compromise appears to be untenable for many involved, leading to continued development delays after the Mile’s groundbreaking. This analysis not only traces the conflict between official and vernacular memory of Willowbrook, but how conflict creates new proposals for memory even as their development remains impeded.

We Walk

In this collection of essays, the author writes openly about her experience as a mother of a now twenty-one-year-old son with severe autism. The author's human emotion drives through each page and challenges commonly held ideas that define autism either as a disease or as neurodiversity. The book is inspired by the author's own questions: What is the place of intellectually and developmentally disabled people in society? What responsibilities do we, as citizens and human beings, have to one another? Who should decide for those who cannot decide for themselves? What is the meaning of religion to someone with no abstract language? Exploring these questions, the book examines social issues such as inclusion, religion, therapeutics, and friendship through the lens of severe autism. In a world where public perception of autism is largely shaped by the “quirky geniuses” featured on television shows like The Big Bang Theory and The Good Doctor, this book demands that we center our debates about this disorder on those who are most affected by its impacts.